NAMI-NYS Granted State Charter -...

IN THIS ISSUE � 30th Annual NAMI-NYS Educational Conference ‘Golden Thread of Hope’

� Article on NAMI-NYS Expanding Signature Programs

� Article by the Director of New York Psychiatric Institute, Jeffrey Lieberman M.D. and Mark Olfson M.D.

A Publication of the National Alliance on Mental Illness | New York State

NAMI-NYS Granted State CharterNAMI-NYS Granted State Charter

NAMI-NYS Delegation Receives State Charter with NAMI-NYS Executive Director Don Capone, NAMI Board Secretary Jim Payne, NAMI-NYS Board President Sherry Grenz, NAMI Board President Kevin Sullivan,

and NAMI Executive Director Mike Fitzpatrick

Summer 2012

President’s Message by Sherry GrenzI am writing this column as the plane is taking off from Seattle.The aircraft is soaring…and so are my spirits! Those of us whowere fortunate enough to attend this year’s National Conventionwere treated to a plethora of informative and outstandingpresentations by top mental health experts in the country. Wehad the opportunity to network with NAMI leaders from everystate, brainstorm and discuss issues of mutual concern. Werevisited old acquaintances, made new acquaintances, andcemented acquaintances that needed repairing. And, as youhave all probably heard by now…we were rechartered, withoutany restrictions. It was a glorious celebration–on many levels. Yes; it is, indeed, “Better Together.”

It has been a busy and productive year for mental health advocates in New York State. NAMI-NYS strongly supported Governor Cuomo’s legislation to establish the Justice Center for theProtection of People with Special Needs. Having a brother in the OMH system, and an uncle in the OPWDD system, I know first hand of the necessity for oversight…on both fronts. Weapplaud the Governor, Speaker Silver, Senator Skelos and the legislature for their leadershipand for their commitment to protect all vulnerable citizens in the State of New York.

I want to take this opportunity to express my gratitude to the current NAMI-NYS board of directors for their support and hard work on behalf of our loved ones. I also want torecognize our Executive Director, Don Capone, and the remarkable staff he has put together.Thank you, Don, Matthew, Sharon, Steve, Andrew, Christine and Tammie. And a special thank you to Commissioner Hogan who has, once again, demonstrated that he is a truechampion of our cause.

The years ahead promise to be particularly challenging ones as we maneuver throughuncharted waters. We will be facing Medicaid funding and federal issues, Health Homes and

pharmacological issues, government downsizing and budget cuts, and the specifics andeffect of the Affordable Health Care Act on our loved ones and on our state remain to

be worked out. And, as always, we must continue to oppose cuts to research:Research is our hope for the future.

NAMI-NYS will most likely have to reassess, reevaluate, and possibly reorganizeif we want to continue to be relevant in this ever changing climate. But I

respectfully implore you all to never lose sight of the premise on whichwe were founded as we explore new avenues and opportunities.

No one can speak as purely, or effectively, on behalf of those with mental illness as YOU, the volunteer. The

grassroots volunteers are the very bed rock of ourorganization. “This above all: To thine own

self be true”. �

2 President’s Message

3 Executive Director’s Message

4 NAMI-NYS News

6-7 Educational Conference8 Fundraising and

Development

9-11 Affiliate News

12-13 NAMI National Convention

15-16 NAMI Programs

18-19 Legislative Conference

20-21 NIMH News

22-23 Ask the Doctor

NAMI-NYS News is published by:National Alliance on

Mental Illness-New York State260 Washington AvenueAlbany, New York 12210

Phone: 518-462-2000Fax: 518-462-3811

Web site: www.naminys.org

Board of DirectorsPRESIDENT

Sherry Janowitz Grenz

FIRST VICE-PRESIDENTDeborah Mayo

SECOND VICE-PRESIDENTMax A. Gabriel

SECRETARYMary Lou Barry

TREASURERThomas Easterly

FOUNDING PRESIDENTMuriel Shepherd

DirectorsPaul CapofariJohn Coon IILelia Fuller

Ceceile GreenJayette LansburyPeggi MillerRonald Moore

Annie Romero WrightMyrna SandersIrene Turski

Richard Valitutto

CONTENTS

2 Summer 2012 � NAMI | NYS News

We are pleased to welcome Paul Capofari to the NAMI-NYS Board of Directors.Paul graduated from West Point and served in the army as an Infantry Officer.He is currently an Assistant District Attorney in Staten Island where, in additionto his other trial duties, he helped establish a Mental Health Court. Paul serveson the Board of Directors of NAMI Staten Island and the Board of Visitors forthe South Beach Psychiatric Center. Paul is a family member and brings withhim a wealth of knowledge and dedication.

Welcome to Our New NAMI-NYS Board Member

I hope that this newsletter finds everyone in the NAMI family doing well and makingplans for an enjoyable summer. I have had the opportunity to travel the state and visitwith many of you this year, and I am alwaysimpressed by the amazing work that you all do in your communities. We have been verybusy at NAMI-NYS over the past few months,and I wanted to take this opportunity toupdate you all on our progress.

First, I want to deliver some very exciting news:NAMI-NYS has successfully completed theNAMI State Charter process. We were one of10 state organizations awarded a Charter atthe NAMI Convention in Seattle. Completion of this process represents another importantstep in our development, and it signifies thatNAMI-NYS meets all of the requirements of an effective, well-run support, education andadvocacy organization. You can read moreabout the State Charter and the NAMIConvention on Page 12.

With our State Charter in hand, we will nowbegin work on the affiliation process. As I have stated at the regional meetings that havebeen held around the state, it is important forall of our members to keep in mind that NAMI-NYS staff are here to assist in every step ofthe process. We will be providing informationand resources so that each NAMI-NYS affiliateis able to make the best decision on how theywould like to move forward with the process.Please feel free to contact us at the office ifyou should have any questions or concerns.

I would like to take this opportunity towelcome new members of our NAMI-NYS staff. Steve Oby has taken over as our State Programs Coordinator, and AndrewChakmakas is our new Affiliate DevelopmentCoordinator. Many of you have already had the chance to meet or speak with Steve and Andrew, and you’ll be hearing more from them as the year progresses. I would

also like to welcome new NAMI-NYS BoardMember Paul Capofari from NAMI-NYC Staten Island.

We continue to work hard to maintain our rankas one of the national leaders in deliveringNAMI Signature Programs across New YorkState. So far this year we have already heldseveral trainings, including In Our Own Voice,Family Support Group Facilitator, Family toFamily and Connection. These trainingsdevelop more teachers, facilitators andpresenters who are available to our affiliatesto run additional programs. We recognize thatthe Signature Programs are an importanteducational tool, as well as an opportunity for affiliates to gain new members as peoplein their community become aware of whatNAMI can provide.

I am also pleased to report that we have been very successful in obtaining grants tosupport our activities. Many of you probablyread the recent news of our grant from the van Ameringen Foundation for additionalSignature Program activity, and a reprinting ofthe Family Survival Toolkit. While this is ourlatest success, we have also obtained grantsfrom the Cetrino, John Snow and Doctorowfoundations. All of these grants are intendedto provide assistance to our affiliates, eitherthrough running additional state and regionaltraining sessions to develop more volunteersto deliver Signature Programs, or providingreimbursement to affiliates for more classesand presentations.

We also held two very successful outreachactivities: the Legislative Conference and aChildren’s Mental Health Week event. Those ofyou who attended the Legislative Conferencehad the opportunity to hear from several statelegislators who spoke of their own personalcommitment to mental health issues, as wellas several outstanding speakers. Please seethe article on Pages 18-19 for more details.

We partnered withseveral otherorganizations topresent anotheroutstanding event:Children’s MentalHealth Awareness– What’s Great inOur State. The reception at the New York StateMuseum brought together teachers, parents,students and advocates to promote children’smental health. Please see the article on Page17 for more about this event.

I would like to take this opportunity to remindall NAMI members to save the date for thisyear’s 30th Annual Educational Conference.Those of you who had the opportunity toattend last year’s conference can speak towhat a wonderful event it was. Inspiringspeakers, the latest updates on research andtreatment, and the opportunity to network withhundreds of mental health advocates from all across the state made for a memorableexperience. This year’s event will be held onNovember 9-11, 2012 at the Desmond Hotelin Albany. I hope to see all of you there.

In closing, I would like to thank each and everyNAMI member for all that you do throughoutthe year to help those suffering from mentalillness. NAMI is all about people, and it is you,the grassroots volunteers, who make thisorganization what it is. As always, the NAMI-NYS office is ready to assist you in any of youractivities. We can provide you with educationalmaterials and other resources, and also lendassistance in areas such as fund-raising, eventplanning and organizational development. Wecan be reached at (518) 462-2000, and wealways look forward to hearing from ourmembers. I want to wish you all a happy andhealthy summer, and I look forward tocontinuing our work together throughout therest of the year. �

3Summer 2012 � NAMI | NYS News

Executive Director’s Message by Donald Capone

Get Your Federal Benefit Payments the Convenient Way�Nearly 1.3 million people report problems with paper checks to the U.S. Department of the Treasury each year. Eliminatethe problems associated with paper checks by signing up for electronic payments of federal benefits and enjoy theconvenience of knowing your money is there when you need it. If you are getting ready to apply for a federal benefit, youwill receive your payments electronically from the start. If you already receive a federal benefit payment by paper check,you must switch to direct deposit or to the Direct Express® Debit MasterCard® card by March 1, 2013. Switching toelectronic payments is easy. Visit the Treasury Department’s Go Direct® campaign website at www.GoDirect.org or calltoll-free (800) 333-1795. �

Executive Director Donald Capone

Finance/Business Office ManagerSharon Clairmont

Development/Events Coordinator

Matthew Shapiro

Affiliate Development Coordinator

Andrew Chakmakas

State Programs CoordinatorStephen Oby

Helpline Coordinator Christine Rickeman

Office Assistant Tammie Paradis

Stephen Oby, State Programs CoordinatorStephen Oby joined NAMI-NYS as State Programs Coordinator in May, only a fewweeks before graduating with his Master of Social Work from the University atAlbany. Stephen comes to NAMI with several years experience working with adultsliving with mental illness in different residential settings as well as a nine-monthinternship fighting stigma and raising awareness with the American Foundation for Suicide Prevention.

From 2007 to 2011, Stephen worked to provide housing support to chronically mentally ill adults in both congregate care facilities and supported housing programs, throughout which he worked with individuals across varying stages of recovery. Stephen’s more recent work with the AmericanFoundation for Suicide Prevention exposed him to the impact of suicide and mental illness oncommunities all over the state as well as the value of leadership from individuals most impacted by these pressing health concerns.

Andrew Chakmakas, Affiliate Development CoordinatorAndrew began working for NAMI-NYS in May as the Affiliate DevelopmentCoordinator. Andrew comes to NAMI-NYS with a Masters in Education from theUnion Institute and University, located in Montpelier, Vermont. His four years of experience in the field comes from working with not-for-profit organizations,including programs providing services to individuals diagnosed with mentalillnesses. Andrew also has several years of experience with affiliate development

with a volunteer nonprofit organization and will be responsible for assisting all NAMI-NYS affiliates inorganizational development and membership growth.

Stephanie Cavalier, InternStephanie began working for NAMI-NYS as an intern in June of this year. She is acurrent undergraduate student at Union College, located in Schenectady, NY. Sheis working towards a degree in psychology, hoping to continue towards graduatework and a career in mental health. Previous experience includes volunteerinternship work at local hospitals.

Jared Selengut, Office Assistant Jared volunteered as an office assistant in June 2012. He graduated from SUNYAlbany in 2007, with a degree in Computer Science, and has since worked at Xeroxas a database analyst. He has experience working with electronic documents andhas been helping NAMI-NYS with the computerization of paper records.

Jared also volunteers with the Capital District Compeer Program which “aims tohelp people living with mental health concerns develop lasting social/community

connections.” Jared’s interest in NAMI stems from his experience as a consumer and his volunteerwork with other consumers. �


NAMI-NYS STAFF

NAMI-NYS NEWS

Support NAMI-NYS through the State

Employees Federated Appeal (SEFA) Campaign

The SEFA campaign allows NYS employees to designate a portion of their paycheck to be automatically donated

to a charity of choice.

NAMI-NYS’s SEFA Number is:

999-00281

If you are a NYS employee please designate NAMI-NYS

as your SEFA charity. If you have friends or family who are NYS employees

please ask them to designateNAMI-NYS as their SEFA charity.

NAMI Bios

SAVE THE DATE

30th Annual NAMI-NYS Educational Conference

November 9th – 11th

The Desmond Hotel and Conference Center • Albany, NY

See page 6


Prospects for Mental Health Care: The glass is half full.Jeffrey Lieberman, M.D. and Mark Olfson, M.D.

The field of psychiatry andmental health care has comea long way in a relatively short period of time. Mentalillnesses including schizophre-nia, manic depressive illnessand depression though firstdescribed in ancient times by physicians such as Hippocrates, were not fully

recognized as medical conditions until the latterpart of the eighteenth century. And it was notuntil the twentieth century that we had the toolsto conduct informative scientific investigation on their neurobiological basis. Most recently research employing the scientific disciplines of molecular genetics, molecular biology, psychopharmacology, neuroimaging and neuroscience has enhanced our understandingof the nature of mental illness and thrust thefield of psychiatry into the mainstream of modern medicine.

Treatment is another matter. Although there were attempts to treat (or at least manage)people with mental illness throughout history,much of it was ineffective, not scientificallysound and occasionally inhumane. In 1939,electroconvulsive therapy (ECT), one of the first truly effective treatments for mental illness,was introduced. Despite its notorious reputation,with many refinements, through research, it hasbecome a highly effective and safe treatment for persons with severe or treatment refractoryforms of depression and other conditions.Psychotropic medications, for conditions rangingfrom psychosis, mood disorders and anxiety toaddictions and attentional disorders, proliferatedin the 1950’s and have since become mainstaysof treatment. Concurrently, numerous evidencebased psychotherapies (CBT, IPT, DBT etc.) and psychosocial rehabilitative therapies (ACT,case management, supported employment,social skills training, cognitive remediation etc.)have been developed that have expanded therepertoire of therapies beyond psychoanalysis.

Even stigma, the prejudice and ignorance of mental illness, has begun to subside. In the United States, people are much moreknowledgeable about mental illness andaccepting of psychiatric treatment than everbefore and more celebrities and athletes arespeaking openly out about their or their familymembers’ mental illness, witness Glenn Close’santi-stigma campaign, “Bring Change to Mind”.In fact when people complain about the

limitations of treatments for mental illness and why more progress hasn’t been made, it isworth remembering that, if one must have themisfortune to suffer from a mental illness, thereis no better time in all of human history for it to happen.

Despite this progress, amid growing public con-cerns over rising health care costs, Americanswith psychiatric disorders are paradoxically facing diminishing access to mental health services. The availability of mental health carehas receded in the wake of rising state and federal debt and a retreat by the private non-profit health sector from psychiatric services in favor of more lucrative and procedurally intensive medical and surgical services.

The current contraction in mental healthservices contradicts everything that we know about mental health problems. They are surprisingly common, can be extremely disabling (and at times life threatening) andoften occur concurrently with non-psychiatricmedical conditions.

The care of Americans with the most severedisorders, such as schizophrenia and bipolardisorder, is heavily dependent on public fundingthrough state mental health systems andMedicaid programs. Facing budget deficits,states have cut nearly $2 billion dollars frommental health services between 2009 and2011. In Arizona and South Carolina, forexample, state mental health care funding hasbeen cut by 23% over this period. Fortunately,New York State is not among them, and hassustained its commitment to provide qualitymental health care to its citizens although the possibility of future cuts is omnipresent. In addition, all but a handful of states haveintroduced (or are in the process of introducing)managed care into their Medicaid programs to further limit expenditures, sometimesresorting to companies with little knowledge or experience in managing the care of peoplewith psychiatric disorders.

At the same time, private non-profit hospitals, a key provider of short-term mental healthinpatient care, are also abandoning theircommitment to this population. In California, the number of acute inpatient beds has fallenby one quarter over the past 15 years. This trend captured national attention late last yearwhen the prestigious Cedars Sinai MedicalCenter announced the conversion of itspsychiatric inpatient beds to medical and

surgical beds. The driving forcebehind this action was not aneasing of the public healthburden posed by seriouspsychiatric disorders, butrather a economically drivencalculated decision byhospitals to increase revenue.

The Affordable Care Act (ACA)offers a promising opportunity to address some of the key structural problems that afflictthe nation’s mental health care system. Thelegislation promotes collaboration betweenmental health professionals and primary careclinicians to address complex physical healthproblems that often plague adults with seriousmental illnesses while at the same timeproviding psychiatric care to patients withmedical illnesses and co-occurring mentalproblems. The ACA also calls for the integrationof medical information systems to help preventpatients from falling through the cracks, and theadoption of effective but underused servicessuch as supported employment programs tohelp adults with serious mental illnessesbecome productive members of society. The ACA will also help to transform the managementof drug and alcohol problems, which are quitecommon among Americans with mental healthproblems. By encouraging the development ofmedical and health homes and collaborativetreatment teams, the legislation helps buildbridges between what have historically beenlargely separate systems of care for substanceuse and other mental health problems.

However, exploiting the opportunities providedby the ACA poses difficult challenges. It is far from certain that the ACA will succeed inimproving the quality and integration of mentalhealth care. Expansion of the Medicaid program,an option that all states may not accept, willinevitably strain health care delivery systemsand increase federal expenditures at a timewhen structural changes will place new andcomplicated demands on mental health andprimary care providers and political pressuresmount to reign in federal expenditures.

Nevertheless, despite this uncertainty, thelandmark legislation is our current best hope for making meaningful progress towardcompassionate, accessible community basedmental health care. We hope that we can takeadvantage of this historic opportunity. �

JeffreyLieberman,

M.D.

Mark Olfson,M.D.

We could not think of a better keynotespeaker for this year’sconference thanSuzanne Vogel-Scibilia, M.D. Dr.Vogel-Scibilia is the living embodiment of the type of hopeNAMI gives families.Dr. Vogel-Scibilia wasdiagnosed at fifteenwith bi-polar disorder

and she has demonstrated that people canovercome mental illness. She has become one of the nation’s most respected clinicalpsychiatrists. She founded and operates anindependent mental health clinic in WesternPennsylvania. Dr. Vogel-Scibilia is a consultantfor psychopharmacology projects at theNational Institute of Mental Health, is a grantreviewer for SAMSHA and serves on the currentDSM-5 committee. Dr. Vogel-Scibilia and herhusband, Jim are also parents of children livingwith a mental illness. Dr. Vogel-Scibilia hasserved as President of NAMI as well ascurrently serving as a NAMI Peer-to-Peermentor and Family-to-Family teacher, afacilitator for bi-polar support groups and iscurrently President of NAMI Pennsylvania. Dr. Vogel-Scibilia’s unique presentation styleencompassing her warmth, courage and sense of humor has made her one of thenation’s most sought-out psychiatric speakers. NAMI-NYS is thrilled to have Dr. Vogel-Scibilia join us this year.

Saturday morning will feature a special plenary session with two of the nation’s leading psychiatric minds, both of whom havebrought their immense talents to New YorkState in 2012: Donald Goff, M.D. and LisaDixon, M.D., M.P.H.

Dr Goff was recentlynamed Director of the Nathan Kline Institute, one of New York State’s tworesearch facilities. Dr. Goff is a pioneerin the development ofglutamatergic agentsin the treatment ofschizophrenia and is a leader in thestudy of medical

morbidity and drug side effects in individualswith schizophrenia. Dr. Goff has authored morethan 100 articles concerning schizophreniaand related topics. He is a recipient of a Faculty Scholar Award in Schizophrenia and a Mid-Career Development Award presented by the National Institute of Mental Health (NIMH) and an American Psychiatric Association (APA) Kempf Award for mentoring in psychiatric research. He is a member of the American College of Neuropharmacology. Prior to heading theNathan Kline Institute, Dr Goff was an Associate Professor of Psychiatry at HarvardMedical School where he served as Director of the Schizophrenia Program of the Massa-chusetts General Hospital and the Boston VA Outpatient Clinic as well as serving as the Medical Director of the Freedom Trail Clinic at the Erich Lindemann Mental Health Center in Boston.

Dr. Dixon was recently named the Director of the New York State Psychiatric Institute’sCenter for Practice Innovations. Dr. Dixon wasnamed Principal Investigator for one of the two independent teams conducting NIMH’s Recovery After Initial Schizophrenic Episode(RAISE) study, which NIMH Director ThomasInsel, M.D. told this year’s NAMI Convention

“is one of the mostimportant initiativesever conducted on the treatment of the neurodevelop-mental disorder.”RAISE seeks to fundamentally changethe trajectory andprognosis of schizo-phrenia through coordinated and aggressive treatmentin the earliest stages

of illness. RAISE is designed to reduce the likelihood of long-term disability that peoplewith schizophrenia often experience. Dr. Dixon’steam has developed the RAISE ConnectionProgram, a research study which will be con-ducted at community clinics in partnership

with the Maryland and New York state mentalhealth systems. Dr. Dixon aims to involve NAMI-NYS affiliates in helping families get their lovedones the treatment they need as quickly aspossible. She envisions NAMI as being a gate-way to treatment and a support for families. Dr. Dixon is extremely familiar with the uniquekind of help only NAMI can provide. She con-ducted a major randomized trial of NAMI’sFamily-to-Family Program documenting the

30th Annual NAMI-NYS Educational Conference by Matthew Shapiro


“Family-to-Family is helpful to fami-lies of people with serious mental ill-ness (SMI) by reducing subjectiveburden and worry and increasing em-powerment, knowledge about SMI,understanding of the mental healthsystem and self care.”– Lisa Dixon, M.D., M.P.H.

NAMI-NYS EDUCATIONAL CONFERENCE

Suzanne Vogel-Scibilia, M.D.,Keynote Speaker

Lisa Dixon, M.D., Director, Center for Practice

Innovations, NYSPI

Donald Goff, M.D., Director,

Nathan Kline Institute

In 2012, NAMI-NYS celebrates the 30th anniversary of our statewide Educational Conference. This special edition of the conference taking placeNovember 9-11 at the Desmond Hotel and Conference Center in Albany, is called The Golden Thread of Hope, because just as a thread consists ofmany intertwined strands that come together to become stronger so does NAMI-NYS. When intertwined, education, support, a strong advocacy voice,the power of grassroots and sharing with one another make up the golden thread of hope that NAMI-NYS has given thousands of families touched bymental illness. It is this thread that joins us as a NAMI family and we are excited to use this conference as a family reunion where we join together tolearn new information, empower ourselves and celebrate all that we have accomplished together and all that we plan to accomplish as we moveforward and demonstrate that as a grassroots movement we are truly better together.


evidence-based conclusion that “Family-to-Family is helpful to families of people with seri-ous mental illness (SMI) by reducing subjectiveburden and worry and increasing empower-ment, knowledge about SMI, understanding of the mental health system and self care.”

New York is fortunate to have these remarkableresearchers working in our state and NAMI-NYSlooks forward to introducing them to confer-ence attendees. This is sure to be one of themost fascinating plenary sessions ever offeredat a NAMI-NYS Educational Conference.

The featured speaker at Saturday’s lunch will be acclaimed author and national Family-

to-Family trainerRandye Kaye. Mrs. Kaye is the author of “Ben BehindHis Voices” of whichPublisher’s Weeklysaid “This well-written,well-researched, andbrutally honest bookwill provide informa-tion, inspiration, andencouragement formany parents.”

Saturday afternoon will feature two workshopsessions. The first sessions will feature workshops on geriatric mental health issues,children’s issues, veteran’s issues and comple-mentary alternative modalities and mindful-ness. The topics for the second session areschizophrenia, bi-polar disorder/depression,anxiety disorders and recovery. The workshopssessions will be followed by an informative update on the state and federal mental health systems led by New York State Office of Mental Health Commissioner MichaelHogan, Ph.D. and Andrew Sperling, Director of Legislative Affairs for NAMI.

Saturday night will be our 30 yearcelebration. Thecelebration will honor all of you who make up thestrands of NAMI-NYS’sgolden thread ofhope. There will be a video retrospectiveas we look back at all that we haveaccomplished overthe last threedecades. In attendance will be dignitaries from NAMI and various elected officials. Thecelebration will be capped off by a dynamicperformance by FLAME. FLAME is an elevenpiece band whose members all have a physical or developmental disability; FLAMEhas inspired audiences throughout the world. Those who saw FLAME perform at the 2010Educational Conference are still talking abouttheir electrifying performance.

Sunday will feature an extended presentation on integrated wellness by Lloyd Sederer, M.D., Medical Director for the New York StateOffice of Mental Health. The conference will

conclude with an “Ask the Doctor”session featuringLewis Opler, M.D.

The Friday portion of the conference will explore criminaljustice issues withthree plenary ses-sions on: ImprovingCourt InteractionsWhen Your Loved Onehas a Mental Illness;

Mental Health Courts;and Crisis Interven-tion Training (CIT).There will also be a screening of the film “Breaking the Silence-StudentVoices Loud andProud” followed by a panel discussionwith the students featured in the film.There will also be a special NAMI-NYS staff-led panel on how to grow your affiliate.The staff is excited for this opportunity to work with our members and show them howthey can build their affiliates to help more people in their communities. Friday will con-clude with the anticipated keynote address by Dr. Vogel-Scibilia.

We look forward to seeing you at what is sure to be a memorable educational andcelebratory experience. You can learn more about the conference by visitingwww.naminys.org, and the registration brochure will be mailed in early fall. �

Randye Kaye, Author,

Ben Behind His Voices

Michael Hogan, Ph.D,Commissioner,

New York State Office of Mental Health

Lewis Opler, M.D.

Lloyd Sederer, M.D.,Medical Director,

New York State Office of Mental Health

The golden thread of30th Annual NAMI-NYSEducational Conference

November 9th – 11th | The Desmond Hotel and Conference Center | Albany, NYE

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2012 NAMI-NYS

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30thAnnual


FUNDRAISING

Summer 2012 � NAMI | NYS News

We are Most Grateful to Those Who Made Financial Donations to NAMI-NYS During the First and Second Quarters of 2012.

$45,000+ van Ameringen Foundation, Inc.

$5,000-$10,000 Ann Allen Cetrino Family Fund and Janssen Pharmaceuticals, Inc.

$1,000-$4,999 John Snow, Inc. and PhRMA

$250-$500 Janet Buck, Four Winds Hospital Saratoga, Jewish Communal Fund, Constance Lieber, Herbert Pardes, Fred & SueSalador and Roger & Ellen Tollefsen

$100-$249 Kenneth & Mary Ann Buzzelli, Joseph Coppola, Patricia Eakins & Peter Martin, Dominic Ferro, Lisa Grumet, Deborah& Jeffrey Mayo, Miriam Meadow, NAMI Putnam Chapter, Melanie Noble, Laurie Rogers, Marian & Carol Rosenbloom,Lloyd Sederer, Muriel Shepherd, Donna & Arthur Soyk and Barbara Zuegel, Employees of Community Works of NYS,Primerose School, Gilbert Yabon and Theodore & Marie Vecchio

$75-$99 Michael Bickman, Joseph & Mary Jane Mastroberdino, NAMI Cortland and Susan Stopek

$50-$74 Jose Alarcon, Fred Anders, Lucia Dailey, John & Lavinia Dunat, Steve Florin, Eileen & Ron Geysen, Neil Goldstein, Beverly Goodman, Peter & James Harriott, Christopher Henley, Joshua & Ruth Herz Fried, Jenn Klotz, Michael Kohn, Neil Mahoney, Michael & LouAnn Pelowski, Marcia Resnick, Donna & Richard Sattler, Joseph & Harriet Schuman, Ruth Tuller, Allan Williams and Audrey Woods

$26-$49 Yehoshuna Ben-Ari, MaryAnn Bruni, Janet Buck, Franklin & Margaret Bushey, Natacha Chopska, Maurice Curran, Lisa Dimitri, Donna & Samuel Dispenza, Sean Duffy, Joseph & Virginia Fodera, Ronald & Claudia Giglio, JoanGreenspan, Sharon Guadagno, Karen Hage, Edward & Metta Hooker, William & Cynthia Hosley, Dottie & Perry Howland,Beverly Jones, Joy Kissane, Vijayakumar Komareth, Dave & Deborah Lewis, Lisa Mulligan, NAMI Boro Park Parents ofYoung Adults with Special Needs, Carolyn Patterson, Philip & Rosa Rizzo,George Roets, Mary Saunders, Bruce & Molly Sibley, Bonnie Soldano,Carol Swenson and Marie Wood

Up to $25 Kathleen Ball, Marsha Basloe, Brenda Beach, Margot Bell,Marie Berberich, Marianne Bergh, Carol Berry, Mario &Nadine Bottali, Catherine Brown, Mary Christiansen,Eleanor Cochran-Heil, Carol Conroy, David Coplon, HughDaley, Donna Eastman, Leah Friedman, Edward Gittelson,Patricia Hammer, Sylvia Isaac, Alice Jena, June Kinney,Joan Kravetz, Thomas Kurimsky, Melina’s CoastalVacations, Melvin Nass, Kathleen & Kevin O’ Callahan,Dolores Poulos, Maureen & Ken Preston, Ronald & EveRattner, Joan Rowley, Jerry Roylance, George & MarshaSchiffman, Marie Schurr, Lewis & Eleanor Spring, FrancineThompson, Annie Wright and Edward & Barbara Zurmuhlen �


NAMIWalks NYC Hits All Time HighSixth Annual Walk Raises Over $440,000 for Free Mental Health Services in theMetro Area by Wendy Brennan

On Saturday, May 12, an estimated 4,500 people gathered for the sixth annual NAMIWalks NYC,together raising over $440,000 for free education and support services for thousands of New York Citymetro area residents impacted by mental illness.

NAMIWalks NYC 2012 benefited NAMI-NYC Metro, along with affiliate partners NAMI Westchester,NAMI East Flatbush and NAMI-Familya of Rockland County. NAMI-NYC Metro provides support,education and advocacy to over 16,000 families and individuals each year.

“This year’s Walk broke records and we are totally thrilled with the efforts of our walkers and sponsors,”said NAMI-NYC Metro Executive Director Wendy Brennan. “With the support of this community, we willbe able to serve more people in the year ahead.”

The five-kilometer Walk, sponsored by Sunovion and community chair Maimonides Medical Center,was held at South Street Seaport on a beautiful, 80-degree day. Walkers followed a route halfwayacross the Brooklyn Bridge and back, and then returned for a wellness fair with health screenings,Reiki healing, Alexander Technique demonstrations, and other sponsor booths.

“There is so much stigma attachedto mental illness, and coming outfor the Walk is all about pride,” saidMichael Andersson of the Bronx, atwo-time Walk Star with bipolardisorder who raised close to$4,000 this year.

“I choose to walk for NAMI becauseit has helped me so much. I amcommitted to helping it grow andflourish,” Andersson said. �

Rain Didn’t Dampen Enthusiasm for NAMI Long Island/Queens Walk by Janet SusinFirst it drizzled, then it rained, and then it rainedsome more, but the crowds just kept coming to the8th annual NAMI Long Island/Queens Walk, atJones Beach on Saturday, May 5. We were amazed!And nothing dampened our spirits. This year for the first time we had a Health & Wellness tent with 25 exhibitors giving out information abouthealthy choices, how to prevent heart disease and diabetes, and did I mention the delicious freesamples. You could even get a massage! A perfecttime for a tent, considering the unrelenting drizzle.There was also music, great bands, both in the tentand on the show mobile, a Kids Korner with facepainting, art projects, and two clowns, Jake andSharon. Lots of food too donated by local supermarkets and Friendly’s of Long Island.

The walk was sponsored by NAMI Queens/Nassau working with 5 local NAMI’s – Central Suffolk,Huntington, Long Island Regional Council, North Shore, and University Medical Center. So far we’veraised $212,772 with donations still coming in. Funds will be used to support NAMI local programsand services. �

NAMI Mid HudsonDutchess County Fair Booth by Barrie Campbell

For several years, NAMI Mid Hudsonunsuccessfully has expended signifi-cant resources to attract people to ourevents. At a Board of Directors meetingabout a year ago, it was decided totake the NAMI message to the peopleby creating a “convention center” typebooth to take to various local events.After getting a generous grant from AMIHightea Foundation, we procured apop-up tent and began designing thebooth. As one of our Family-to-Familyclasses ended, they took on the com-pletion of this booth and actually usedit at an event as a class project. Thebrother of one of the class members isa professional graphics designer andhelped finalize displays. The class putin for one of five free booths at theDutchess County Fair, and fortunatelywas selected to participate.

The Dutchess County Fair is truly aregional event, attracting 350,000attendees each year. It will run 10AMto 10PM daily 21 Aug to 26 Aug 2012.The Fair administration indicates wecan expect 10,000 to 20,000 visitorsto our booth during the six days. We are working on having stress ball give-aways, NAMI pamphlets andcontinuous media displays on our 47" TV. We are structuring our boothlike a rest stop where tired fair-goerscan relax for a few minutes. The boothwill be continually staffed by twopeople from the Affiliate.

NAMI Mid Hudson are excited for thepotential this booth provides to getNAMI’s messages to the people of our region. Our main objective is to letindividuals who suffer from mentalillness, and their loved ones, know theyare not alone... that there are caring,knowledgeable people who can provideadvocacy, support and education. �

AFFILIATE NEWS


NAMI Queens/Nassau Receives Grant for CIT Training and Breaking the Silence School Programming by Janet SusinA grant for $100,000 from the Unitarian Universalist Congregation at Shelter Rock, our second, will give us an opportunity to expand our CIT (CrisisIntervention Team) police training in Nassau County. We’ve developed a special relationship with the Village of Hempstead police and look forwardto working with them to train other police forces in Nassau County. A portion of the grant money will also be used to do 15 assembly programs inlocal schools featuring our new Breaking the Silence video, “Student Voices Loud and Proud”, and Dan Berstein, an eloquent and passionate In OurOwn Voice trained speaker. �

Natural SupportsTo Bulris, the Recovery Center movement makestremendous sense. “It’s helping people createan idea of self worth and self esteem, so theycan be part of the community,” she said.

The Recovery Center is a virtual program. Ratherthan working in a central location, “staff mem-bers will be in the community … helping othersexplore their passions and desires, maybeschool, art, cooking.” Combined with basic skillbuilding and other supports, those efforts, shesaid, will allow participants to join society in pro-ductive and fulfilling ways. “It’s about creatingnatural supports in the community.”

Peer DrivenIn the near future, NAMI will hire a program di-rector to get the Recovery Center off the ground,Bulris said. “That person will go out into thecommunity, assess the needs of consumers andcraft the programs based on the assessment.”

By September, all five employees should beaboard, she said. Among them will be a benefitsadviser with expertise in such complicated is-sues as Medicaid, returning to the workforce andenrolling in college. A skills builder will work inthe community, assisting clients with basic ele-ments of independence. And there will be peerpositions, people who will befriend participants,giving them encouragement and support.

All the positions, Bulris said, including those onan advisory committee, will be held by peoplewho themselves have mental-illness diagnoses.“People who have been there, done that, can

understand better what someone else is deal-ing with,” she said. “Studies have shown that it works.”

WarmlineYear 2 of the funding, Bulris continued, willinclude the creation of a “warmline” that will fill a much-needed void. Clinton County has asuicide hotline, but a “warmline” would givesupport to those who are struggling in some way yet aren’t despondent.

People with mental illness are often segregatedfrom the rest of society, she said, and theresulting loneliness can very much contribute to depression and other manifestations of thedisease. “I’m sure many of the calls on thesuicide hotline are just people who are verylonely,” she said. A friendly, supportive voice, she said, can make all the difference. Suchcommunity supports, she noted, translate intofewer hospitalizations.

The Department of Mental Health expects that after the three years of grant money runsout, the Recovery Center will be self-supporting,Bulris said. Even so, then and now, NAMI’s otherofferings run parallel to the Recovery Center’saims. “Our programs will be working together.”

Funding DilemmaWhile the grant more than doubles NAMI’sannual budget of about $120,000, Bulrisemphasized that it doesn’t pay for anything now in place. Those costs include insurance, rent and salaries for five employees.

NAMI doesn’t know year to year where its

funding will come from, Bulris said. For example,the Foundation at CVPH paid for depressionscreening at schools last year, a program thathas proved helpful in identifying kids at risk andgetting them referred to help, she said. AfterJune, only partial funding is in place, from theUnited Way.

Other funding comes from the CommunityService Board, Clinton County Youth Bureau andother sources, along with fundraisers designednot only to bring in money but to educate thepublic about mental illness in the hopes ofeliminating the stigma associated with it.

Fighting StigmaThe annual Anti-Stigma Concert, held recently at Therapy Nightclub in Plattsburgh, brought inabout $700.

But more important was the message, Bulrissaid. Several bands from the area performed butalso shared stories about mental-health issues.“One member has ADHD and bipolar,” she said.Another group lost a musician to suicide a fewmonths ago and played a moving song they’dwritten in his memory. A large-screen TVthroughout the evening showed many famousAmericans with mental illness who are able toachieve great things. The Recovery Center grantwill give others the chance to do the same.

“If given the right direction and the right socialand natural supports they can lead just asfunctioning a life as any other person without a disability,” Bulris said. So the grant, she said,“is very awesome.” �

PLATTSBURGH — A grant totaling $729,000 over three years is aimed at helping those with mental illness in Clinton County move beyond their diagnoses.The new program, one of several in New York state and tagged the Recovery Center, has started out under the umbrella of the National Alliance on MentalIllness: Champlain Valley. The Plattsburgh-based organization, which offers assistance through its advocacy program, depression screening in schools andsupport groups, wrote the application and was awarded funding through the Clinton County Community Service Board. That entity subcontracts such initiativeswith local agencies, said NAMI-Champlain Valley Executive Director Amanda Bulris.

Grant strives for recovery from mental illness

Program Will Assist Those with Mental Illness Written by SUZANNE MOORE, News Editor of the Press Republican, Submitted by Amanda Bulris

AFFILIATE NEWS


Children’s MH event by Judy Bliss-Ridgway

On May 16th, NAMI Syracuse held its firstChildren’s Conference to celebrate May isMental Health Month and to honor the memoryof Joe Gentile (9/25/31 – 10/7/11).

More than 90 persons attended the conference.The attendees were made up of school

teachers, mental health providers, and familymembers. The program was well received andvery positive feedback encourages NAMISyracuse to make this an annual event.

Kevin Antshel, Ph.D. Director of Lifespan ADHD Treatment Program at SUNY – Upstate

Medical University had much to share aboutADHD and Beyond the Basics. His presentationwas followed by our keynote speaker, Andrew J. Gerber, M.D., Ph.D., who presented theCurrent and Future Directions in Diagnosingand Treating Childhood Psychiatric Disorders. In the afternoon, James S. Demer, M.D. sharedabout Treating Depression in Children. Wecompleted the day with a presentation bySandra Powers and Tara Pienkowski about Using the DIR Method & “Floortime” Approach.This was very informative and demonstratedhands on skills. Both are Special EducationTeachers for Liberty POST.

It was most fitting that the conference was held in the conference facility at the RosamondGifford Zoo. �Speaker Kevin Antshel presenting to attendees

Murder in Rockland County! by Marlene Becker

As every NAMI knows, in this economy, we must do fundraising to be able to support ourprograms. I know that when you make it fun… they will come. So I decided, a murdermystery dinner where the audience would be involved in finding the culprit who commitsthe dastardly deed, would fit the bill.

This event, was put together with the help of Eileen O'Brien, Liz Falco, Eric Bender, DonnaCook, Gail Ragusa, along with support of Sandy Wolf, Sandi Partridge, Lindsay Falco whohelped out during the function. After buying a “How to host a murder mystery game,” I tookthe premise and transformed it into an interactive play. There was such excitement aboutthe project that family members, hospital staff, and peers approached me before it waseven written!

Although nervous at first, the actors hammed it up, the audience ate it up, and the culpritwas caught. There are rumors that another murder might be necessary… �

NAMI Rochesterselected to hostNAMIWalkNAMI-NYS wants to congratulate NAMIRochester on being selected as a NAMIWalkhost. The affiliate is very excited to join NAMINYC Metro and NAMI Queens/Nassau as thethird New York affiliate to host a NAMIWalk.NAMI Rochester is planning for a May 2013walk date and will have many more detailsas the event gets closer. We're hoping manyaffiliates are able to bring teams to this eventas we help spread NAMI's identity in upstateNew York. �

The End of an Era: Shuster and Kirkland Step Down Photo credit: The Buffalo News

NAMI-NYS would like to congratulate Lynne Shusterand Mary Kirkland on their many years of service given to NAMI-NYS. As leaders of NAMI-Buffalo andErie for 28 years, Shuster and Kirkland have decided to step down together. These women have made greatstrides in making their affiliate a supportive place for individuals seeking assistance with their MentalHealth concerns. Although their roles will be different,we’re sure they will be no less involved or dedicatedgoing forward. Lynne and Mary we thank you for whatyou’ve given to our members and organization, you areboth a model of what determination and great effort can achieve. �

The NAMI 2012 National Convention “Wellness,Resiliency and Recovery” was held in Seattlefrom June 27-30, and drew participants fromall over the country. The event provides anopportunity for NAMI members to hear fromleaders in the mental health field, participatein workshops on many topics, and network withadvocates.

Seattle was a wonderfulhost to NAMI, withwelcome signs appearingat the airport, on thestreets and in the hotel.There were many highlights,but one of the mostexciting was the ceremonyin which NAMI-New YorkState was among the tenstate organizations granteda State Charter by NAMI.We are now one of sixteenstates with a Charter, whichsignifies that we have met all of therequirements for the NAMI Standards ofExcellence. The New York delegation waspresented with the Charter Certificate by NAMIPresident Kevin Sullivan, Board Member JimPayne, and NAMI Executive Director MikeFitzpatrick. The ceremony was the culminationof a process that began in May 2011, when theNAMI-NYS Board of Directors voted to pursue aState Charter.

Convention attendees had the opportunity tohear from Dr. Thomas Insel, the Director of theNational Institute of Mental Health (NIMH), whogave a presentation, entitled “Rethinking MentalIllness: The View from 2022.” Dr. Insel’s talk

detailed how researchbreakthroughs of todaysuch as the ability to mapthe human connectometo create a betterunderstanding of theneural circuits of thebrain, as well as anunderstanding of thevariations in the DNAsequence will change theway psychiatric disorders are viewed in thefuture. For instance, in the future, what we today call schizophrenia will be identified asseveral different ailments based on a deepercomprehension of the wiring of the brain. NAMI-NYS is proud to serve as New York’sOutreach Partner for NIMH, and we look forwardto providing our members with the latest newsand updates from NIMH as they create a betterunderstanding of the brain and mental illness.There were also opportunities to hear updateson topics such as first episode psychosis,bipolar disorder, dual diagnosis and many other issues.

Another highlight ofthe Convention wasa presentation from

Pro-Bowl football player Brandon Marshall (ofthe Chicago Bears) who discussed his strugglewith Borderline Personality Disorder. Marshalldetailed his three-month treatment program at McLean Hospital in Massachusetts and the daily regimen he performs to maintain his baseline. He spoke about the power ofDialectical Behavioral Therapy (DBT) developedby Marsha Linehan, Ph.D. Marshall has made adocumentary about his treatment and recoveryand ESPN was on hand to film his conventionpresentation. The film and the ESPN’s promotion

of it will help to create a better understanding of one of the most misunderstood mentalillnesses, as well as creating more aboutawareness about NAMI.


Seattle NAMI National Convention

Seattle welcomes NAMI

Thomas Insel, M.D.,Director NIMH

Brandon Marshall and Matthew Shapiro

Front: NAMI-NYS Executive Director Don Capone, NAMI-NYS Board President Sherry Grenz, NAMI ExecutiveDirector Mike Fitzpatrick Back: NAMI Board Secretary Jim Payne, NAMI Board President Kevin Sullivan

NAMI NATIONAL CONVENTION

NAMI-NYS Charter

One addition to the Convention this year wasthe Parity for Patriots Rally which was held inDowntown Seattle’s Westlake Center Park. Therally provided an opportunity for attendees tohonor America’s veterans and their families.Several inspirational speakers addressed alarge crowd of NAMI members to drive homethe need for supportfor our heroes asthey return fromcombat. The rallycalled for psychiatricinjuries from combatto be recognized inthe same way asphysical injuries,and that the PurpleHeart shouldawarded to thosesuffering from PTSDand Traumatic BrainInjuries.

New Yorkers were also featured throughout theConvention. David Deferrari (NAMI-New York City Metro) was presented with the SpanishPrograms Distinguished Service Award by theNAMI Education, Training and Peer SupportCenter. David was honored for his “outstandingwork and dedication to improve the quality

of NAMI Education program materials inSpanish.” Ilene Flannery Wells (NAMI-MidHudson) appeared as part of a panel on theSupreme Court’s Olmstead Decision. Ilene’spresentation centered on her family’sexperience with her brother Paul’s struggle with mental illness, and she was supported by

several of her siblings whotravelled to Seattle for her.

New York was wellrepresented at theConvention. We held aState Caucus the eveningbefore the NAMI Boardelections, and we werevisited by nearly all of theBoard candidates, whomade presentations ontheir views of NAMI andwhat they hoped toaccomplish if elected. �


Randye Kaye, author of Ben Behind his Voices who will be presenting at the 2012 NAMI-NYS

State Conference

NAMI Board Member Ralph Nelson Presents to theNew York Caucus

NAMI Secretary Jim Payne Presents to the New York Caucus

NAMI President Keris Myrick and Suzanne VogelScibilla M.D. (Keynote speaker at the 2012

NAMI-NYS State Conference)

NAMI Mid-Hudson Member Ilene Wells Presents on the Olmstead Act

Parity for Patriots Rally

Don Capone, Sherry Grenz, and NAMI Chief Operating Officer

Lynn Borton

NAMI-NYS Board members PaulCapofari and Irene Turski at the

Parity for Patriots Rally


BOARD OF DIRECTORS ELECTION AND BYLAWS PROPOSAL INFORMATION

NAMI Members please take notice of the following information regarding the upcoming board of directors election and bylaws proposal process. All formscan be downloaded from the NAMINYS home page. To obtain these forms please go to www.naminys.org, then click on the links under the ‘NAMINYS2012 Election Information’ section.

THE BYLAWS AND RESOLUTIONS COMMITTEEwishes to inform you of the2012 bylaw proposal process.Bylaw resolutions proposed byvoting members shall be sub-mitted in writing to the Bylawsand Resolutions Committee,forwarded to the NAMI-NYS Office by U.S. Postal Service,either by registered mail, certified mail, Express Mail or Priority Mail, or any otherUSP service offering Return Receipts or Signature confir-mation. Faxes and emails arenot acceptable.

We will accept bylaw resolu-tions postmarked up to and including, Monday, August 13,2012. Bylaw proposals are tobe sent to NAMI-NYS Bylawsand Resolutions Committee,260 Washington Avenue, Albany, NY 12210. The commit-tee will forward the resolutionswith recommendations to theNAMI-NYS Board fifty (50) daysin advance of the election. TheBoard will send resolutions withrecommendations to the mem-bers by October 11, 2012.

Please clearly state in yourcover letter whom the resolu-tion is from. If the proposal isfrom more than one individual,please include the names ofthe individuals. Please notethat your proposal will beprinted in the same manner as it was received.

If more information is needed,please contact Deb Mayo [email protected]. �

THE NAMI-NYS NOMINATING COMMITTEE is seeking candidates for the Board of Directors. At this time,we have five (5) Board positions open. The election will take place at the Desmond Hotel in Albany at ourannual Educational Conference on November 9-11, 2012. In order for a candidate to be considered, thefollowing criteria must be met.

� All Board members are expected to be active advocates and participants on at least one committee.They should provide NAMI-NYS with dedication, skills, and resources to further its goals and objectives.

� To the greatest extent possible, the Board of Directors should represent the diversity of New YorkState.

� The Board of Directors shall consist of persons who have or have had mental illness in their family or persons who themselves may have had a mental illness. Family member includes guardian in fact or in law.

� The Board of Directors shall consist of 16 elected members, one of whom shall be nominated andelected as a consumer member. Each elected member shall serve for a term of three years, except forthose elected to fill a vacancy. At each annual meeting of the members, five regular directors and everythree years, the one consumer-director shall be elected to fill the vacancies of directors whose termsexpire at the end of that meeting and they shall hold office until the third succeeding annual meeting.

� Each member may submit the name(s) of any member(s) of NAMI-NYS as a proposed nominee for director. The nomination prepared must include the nominee’s full name, home address andcontact information. Such proposals shall be written, accompanied by a brief resume (we suggest 500 words or less) and written consent of the person nominated, and forwarded to the Chairperson of the Nominating Committee by September 11, 2012. The Nominating Committee shall review thequalifications of all nominees, their nominators, and their resumes, and shall send to each member the qualified list by October 11, 2012.

� Paid staff members of NAMI-NYS or any NAMI affiliate may not be elected to the Board of Directors.

� The candidate must be a member in good standing at the time of the nomination. The personnominating him/her must be a member in good standing. The affiliate(s) the nominee and nominatorare a member of must be an affiliate(s) in good standing. This means that membership dues for thenominee, the nominator and the affiliate(s) must be in good standing at the time of the nomination.Affiliate dues are $10. The deadline for nominations this year is September 11, 2012. We will acceptnominations postmarked up to, and including, September 11, 2012. The deadline this year formembers to be eligible to receive a ballot to vote is October 1, 2012. We will accept membershippostmarked up to, and including, October 1, 2012.

� Nominations must be forwarded to the NAMI-NYS office by US Postal Service, either by registered mail, Express Mail, or Priority Mail, or any other USP service offering Return Receipts or Signatureconfirmation. Faxes and emails are not acceptable. Nominations are to be sent to NAMI-NYSNominating Committee, 260 Washington Avenue, Albany, NY 12210.

� A recent photograph of the candidate is requested but not required. The photograph is permitted to be sent via email.

If more information is needed or if you have any questions, please contact Deb Mayo or Irene Turski.Deb’s phone number is (631) 675-6831 and email address is [email protected]. Irene’s phonenumber is (716) 837-7835 and email address is [email protected] �


A bi-annual NAMI-NYS tradition continued this spring as an exceptional group of trainees descended on the Ararat Center in Greenville, NY, to join the state’s ranksof Family-to-Family teachers and In Our Own Voicepresenters. Under the extraordinary guidance of Michael Andersson, Lady Charmaine Day, BonnieGoldburg, Mary Lee Gupta, Patti Sacher, and PamSolomon, participants developed the skills to educatethe public through these two Signature Programs.

The Ararat Center remains a scenic and welcomingenvironment for volunteers looking to contribute to NAMI via the Signature Programs. Located at the foot of the Catskill Mountains, the Ararat Center will functionas the training site for four Signature Programs this fall:Family Support Group, NAMI Basics, and, once again, In Our Own Voice and Family-to-Family. It has proven tobe the perfect setting for skill development, engagementwith new friends and colleagues, and even far-off bearsightings as our recent graduates can attest.

This ongoing use of the Ararat Center to foster NAMI’s growth in the state is indicative of the broaderexpansion of programs throughout New York. A group of new In Our Own Voice presenters were trained inBrooklyn in March, NAMI Rochester Families andFriends successfully trained 16 new Family SupportGroup facilitators in May, and NAMI FAMILYA ofRockland County graduated 16 new facilitators for NAMI Connection in June. Additionally, NAMI NYC Metro will host both a De Familia a Familia training in August and a Basics training in September, and othertraining opportunities are anticipated by year’s end.

In adding such a large number of teachers, presenters, and facilitators, NAMI-NYS is deepening and expanding its grass roots at an outstanding rate. Our members, ourtrainees, and the people of New York are undoubtedlybetter off thanks to the strong programming driven bythe affiliates of NAMI-NYS. �

NAMI PROGRAMS

Trainers and trainees from Connection training held in Rockland County

Family-To-Family studentsIn Our Own Voices students

Family-To-Family and In Our Own Voice Trainings a Success at Ararat Center by Stephen Oby

Family-to-Family graduates and instructors

In Our Own Voice graduates


NAMI Central Suffolk and NAMI HuntingtonContinue Family-to-Family at Northport VA by Nancy Hollinshead and Jeanne Bianco

First Family Support Group Facilitator Training Completed in Western New York by Pat SineSixteen NAMI members from all over the state were certified to become Family Support Groupfacilitators at the Holiday Inn Express in Victor, NY in May 4-6th 2012. This was the secondtraining for the State Teachers, Rochester’s Jodie Terhune and Pat Sine. They conducted a FSGtraining last Fall in Albany and they will be conducting one this Fall, Oct. 19th—21st. The traineesfrom NAMI Rochester were: Amy Baker, Kate Daniele, Denise DiNoto, Claire Perlman, Mary EllenTomanovich and Judy Watt. From Wayne county: Shirley Odell and Dawn Mesleyn and fromGenesee county, Jamie Bragg. The trainees were eager to go back to their affiliates and bring themodel to existing support groups or to start a new family support group in their affiliate. �

NAMI East FlatbushSuccessful in IOOVTraining by June RodriquesNAMI East Flatbush, ever expanding, completedits first In Our Own Voice training on Sunday,March 11, at Kings County Hospital’s BehavioralHealth Building. Thank you, Paul Klein, formaking this your last official NAMI-NYS duty.

Thank you and our sincere gratitude to NAMINew York City Metro for providing both teachersfor the event.

We have already done two presentations and we are looking forward to doing our firstforensic presentation to the in-patients atKingsboro Psychiatric Center later in July orearly August.

We eagerly anticipate our second Family-to-Family class starting on Saturday September15; and our second Peer-to-Peer class startingWednesday September 26. Both classes will beat Kings County Hospital Center.

Kings County Hospital Center has generouslyoffered the use of their space for our classes.Thank you Dr. Joseph P. Merlino, DeputyExecutive Director of Behavioral Health; Ms. Eva Sanders, Director of Behavioral Health Social Work; and Ms. Janine Perazo,Director of Wellness, Recovery, and CommunityIntegration. �

Syracuse VA-NAMI Family-to-Family Class 2012by Ann Canastra

NAMI Syracuse completed its 4th Family-to-Family course with the Syracuse VA.This project began through the memoran-dum of understanding (MOU) betweenNAMI National and the VA Central Office.All of the graduates are from the Syracusearea, most of which are family membersof veterans living with a mental health di-agnosis. The teachers Ann Canastra (VAClinical Staff) and Ray Hart (retired Ser-geant) were an excellent team for thistraining, and a similar training is hopefulfor the fall. �

Pictured from Left Back Row: Robyn, Cindy, Bill, Marsha,Michelle, Ray Hart (Instructor); Middle Row Left: Anitra,

Luana, Dorothy, Char, Cheri Caiella (Instructor); Front Row Left: Ann Canastra (VA Staff & Instructor),

Debi, Dominica, Barb; Not Pictured: Lynn

Nancy and Jeanne’s second session of Familyto Family at the Northport VA was anotherresounding success. Following on our firstsession, this class also comprised individualsrepresenting the full spectrum of familymembers and diagnoses of loved ones, againroughly half of whom were veterans or veteranfamily members. We had two guests for ourRecovery Class: Barry Goggin, for the secondtime, and Lillian Denby, both of whom aredelightful. The class party was fun and includedmany of our ill family members, some of whommade connections with each other. Perhaps as

a result of the continued success, and obviousdemand within our community, the next classwaiting list has started to grow already. Towardthat end, we continue to look for morevolunteer teachers to be trained in Family toFamily so that we do not have to turn awaythose who wish to take the class. I rememberhow desperate I was to get into the classbefore I took it, and it pains me to tell peoplethey may have to wait. It is, as any of us whohave taken it can attest, a transformativeexperience and one which helps the entirecommunity. �

NAMI PROGRAMS

Summer 2012 � NAMI | NYS News 17

Children’s Mental Health Event by Matthew Shapiro

NAMI-NYS continued our efforts to celebratechildren’s mental health awareness by leading a broad collaborative effort which produced“What’s Great in Our State-A Celebration ofChildren’s Mental Health Awareness” which tookplace during the first week of May. The initiativefound NAMI-NYS partnering with non-profitorganizations who work on both mental healthand children’s issues (the Schuyler Center forAnalysis and Advocacy; the Mental HealthAssociation of New York State; the Early Careand Learning Council; and Families Together inNew York State) and New York State agenciesthe (Office of Mental Health; the Council forChildren and Families; and the Early CareAdvisory Council).

The endeavor had two components. The first wasto inform New York State legislators and their staff on children’s mental health issues. This was achieved by having exhibits in the Legislative Office Building which coincided with the introductionof the Mental Healthin Education Bill. Thecenterpiece exhibitbeing the multime-dia, interactive “In-vest in US” whichwas provided by theFirst Five Year’s Fundand the W.K. KelloggFoundation.

The second compo-nent was the recep-tion at the NYS Museum which honored theteachers, parents, students and advocates whopromote children’s mental health. The free re-ception had more than 100 attendees made upof children’s advocates, teachers, PTA membersand students. The goal of the reception was toshowcase those who have developed innovativeways to promote mental health issues with chil-dren and adolescents to inspire and motivatethose in the audience to replicate these pro-grams in their schools and communities.

The reception honored two NAMI-NYS members.The first was Ashley McDuffee, a high-schoolstudent from the NAMI Montgomery, FultonHamilton affiliate. After taking the Family-to-Family course, Ashley began speaking to herpeers and teachers throughout the Fonda-Fultonville school district. Ashley has spoken toclasses and PTA groups, and organized specialassemblies about understanding mental healthand compassion for students with mentalillness. Ashley also competes in pageants.

She has used her titles as Miss Mohawk ValleyOutstanding Teen and Junior Miss Fonda Fair to educate the broader community on mentalhealth awareness. As acontestant, Ashley hasmade mental healthawareness her speakingplatform. Ashley began the reception with aperformance of her song“Break Free.” Ashley wrote“Break Free”-which takesthe perspective of ateenager living with amental illness-for hercompetition in the MissNew York’s Outstanding TeenScholarship Pageant. Ashleyclosed the program by detailing her workpromoting understanding mental illness in her community.

NAMI-Queens/Nassaumember Linda Manzo was also recognized at the reception. Linda who is a teacher at Carrie Palmer WeberMiddle School in PortWashington has createdlesson plans on mentalhealth awareness andorganizes the studentclub “Student Voices-Stopping Stigma.” The

club promotes mental health awareness throughstories and art projects and regularly

participates in the annual NAMI Long IslandWalk at Jones Beach. Unfortunately Linda wasnot able to attend, but pictures of the activities

performed by Linda and the kids in “StudentVoices” were shown. The new video “Breaking theSilence-Student Voices Loud and Proud” whichfeatures both Linda and Ashley was alsoscreened in the exhibit area.

The reception also featured an address by New York State Office of Mental HealthCommissioner Michael Hogan. NAMI-NYS andour collaborative partners were also presentedwith a proclamation from Governor Cuomowhich officially deemed the first week of May“Children’s Mental Health Awareness Week.”NAMI-NYS looks forward to deepening ourcommitment to children’s mental health and is currently seeking funding to broaden thisinitiative to further educate families and schoolsystems on children’s mental health issues. �

Ashley McDuffee andCommissioner of NYS Mental

Health Michael Hogan

Linda Manzo with Her Students

Ashley McDuffee Singing at Reception

Collaborative Partners Presented with Proclamation from Governor Cuomo

18 Summer 2012 � NAMI | NYS NewsSummer 2012 � NAMI | NYS News

On March 7th, NAMI-NYS held its annualLegislative Conference as hundreds of advocatesfrom throughout the state traveled to Albany tomeet with their legislators to ask for theirsupport of the 2012 NAMI-NYS Action Agendawhich consisted of: Affordable Housing forPeople with Mental Illness; Reinvestment inCommunity Services; Increased Support ofVeteran’s Mental Health; Continued State-Funded Support of Psychiatric Research;Incorporation of Mental Health Education inSchools; and Expansion of Crisis InterventionTraining and Mental Health Courts.

The conference included a panel discussion on Creating Safe and Affordable Housing forPeople with Mental Illness. The featuredpanelists were Ralph Fasano, Executive Director,Concern for Independent Living;Clarence Jordan, NAMI Boardmember and Andrew Sperling,NAMI Legislative Director.

The conference also includedpresentations by: Gregory Allen,Director, Program Developmentand Management, Office ofHealth Insurance Programs,New York State Department of Health, who provided anupdate on the MedicaidRedesign; New York State Officeof Mental Health CommissionerMichael Hogan, who gave anupdate on New York’s mental health system; and Ashley Ennis of New York Health Works, who discussed issues effecting open access to medications for Medicare recipients.

Conference attendees were alsojoined by Assemblyman Felix Ortiz,Chairman of the Assembly MentalHealth Committee who, along with Senate Mental Health andDevelopmental Disability Chair, RoyMcDonald, was presented with theNAMI-NYS Legislative ChampionAward. Assemblyman JeffrionAubrey, Assemblyman Marc Butlerand Assemblyman Thomas Abinantialso addressed the conference.

The Legislative Conference was thecenterpiece NAMI-NYS’s successfuladvocacy efforts during the 2012NYS Legislative Session. NAMI-NYS’sadvocacy voice contributed to two major

legislative victories thissession: Inclusion of“Prescriber Prevails”language for atypicalantipsychotic medicationsinto the enacted budget;and the creation of theJustice Center for theProtection of People withSpecial Needs.

Since early in 2011, when Governor Cuomoannounced a majoroverhaul of the Medicaidsystem, NAMI-NYS has

been a leading voice in advocating first for a“carve-out” of mental health services and thenfor prescriber prevails provisions which wouldensure open access to medication. In press

conferences, meetings with state officials and testimony before the Pharmacy andTherapeutics Committee, NAMI-NYS hasconstantly explained that open access tomedication is crucial for people with psychiatricdisabilities. NAMI-NYS argued that those withmental illnesses who are unable to access the most appropriate, clinically indicatedpsychiatric medication experience higher ratesof emergency room visits, hospitalizations, andother health services. Furthermore, we haveexplained that antipsychotic medications are not clinically interchangeable, and providersmust be able to select the most appropriate,clinically indicated medication for their patients.

NAMI-NYS and our fellow mental healthadvocates celebrated in March, when welearned that prescriber prevails protections for atypical antipsychotic medications wereincluded in the enacted New York State budget.While this is a major victory for people with

Attendees on the concourseAttendees listening to speakers

LEGISLATIVE CONFERENCE

NAMI-NYS Legislative Conference and Advocacy Efforts by Matthew Shapiro

NAMI Board Member, Clarence Jordan, NAMI-NYS Board President,Sherry Grenz, NAMI-NYS Executive Director, Don Capone,Assemblyman Felix Ortiz, and Assemblyman Jeffrion Aubrey

Annie Romero, chair of the NYS MulticulturalCommittee, and NAMI-NYS Board President Sherry Grenz present Assemblyman Felix Ortiz

with the Legislative Champion Award

Assemblyman Jeffrion Aubrey withJayette Lansbury, Criminal Justice

Chair of NAMI-NYS

19Summer 2012 � NAMI | NYS NewsSummer 2012 � NAMI | NYS News

psychiatric disabilities and those who careabout them, there is more to be done. Manymedications, including antidepressants, were not granted the same status, and NewYorkers will still not have open access to them.NAMI-NYS will continue to fight for open access to all medications.

In June, the New York State Legislature passed Governor Cuomo’s Justice Center bill,establishing the strongest standards andpractices in the nation to protect those withspecial needs or disabilities. This law will createa new Justice Center that will track and prevent,as well as investigate and prosecute, reports ofabuse and neglect. This was a major victory forNAMI-NYS and the hundreds of thousands ofpeople, self-advocates, and family members that lent their voice to the massive advocacyeffort to give more than one million New Yorkerswith special needs the protection and justicethey deserve.

NAMI-NYS thanks all of our members who lent their voice to our tremendous advocacyefforts this year. It is you that makes ouradvocacy voice so powerful.

In other legislative activities NAMI-NYS President Sherry Grenz and Executive DirectorDonald Capone gave testimony before the JointCommittee on Mental Hygiene detailing theNAMI-NYS Action Agenda.

NAMI-NYS also delivered testimony to theSenate Mental Health and DevelopmentalDisabilities Committee on PTSD. The testimonycontained a heart-felt testimonial from NAMI-NYS Veteran’s Mental Health Chair, Max Gabrielalong with a description of NAMI-NYS activitiesat Veterans Administration (VA) Medical Centerin New York City, Long Island, Westchester,Syracuse and Albany. NAMI-NYS also made the following recommendations to address PTSD in veterans:

� The military must eliminate the stigma ofmental illness.

� The New York State Legislature must pass bill A.1070/S.4760, which wouldrequire the commissioners of the Office ofMental Health, the Office of Alcoholism and Substance Abuse Services, and theDirector of the Division of Veterans’ Affairs to develop a public education campaign on mental illness and chemical dependencyamong service members, veterans and their families.

� The VA needs to create a peer support andeducation network.

� Military families need to be educated andsupported both during their loved one’sdeployment and on their return home.

� The full spectrum of therapeutic approachesfor PTSD must be made available to veterans.

� Community based services must also be put in place to make veterans’ transition tocivilian life as smooth as possible. �

OMH Commissioner, Mike Hoganaddresses NAMI-NYS members

Assemblyman Thomas J. Abinanti addresses NAMI-NYS members

Housing panel, L-R: Deb Mayo, NAMI-NYS Board 1st Vice President,Ralph Fasano, Executive Director of the Concern for Independent Living,

Andrew Sperling, NAMI, Director of Federal Legislative Advocacy,Clarence Jordan, NAMI Board member

Sherry Grenz, NAMI-NYS Board President with Greg Allen, Department of Health and Don Capone

NAMI-NYS Executive DirectorRally for Open Access to Medication and

Provider Prevails

Governor Andrew Cuomo, NAMI-NYS Board PresidentSherry Grenz, Assemblyman Felix Ortiz at the

Announcement for Justice Center

In December of 2011, NAMI-NYS was chosento continue as the Outreach Partner for theNational Institute of Mental Health (NIMH) inNew York State. The Outreach PartnershipProgram is a nationwide initiative of NIMH’sOffice of Constituency Relations and PublicLiaison, and is designed to increase thepublic’s access to science-based mentalhealth information through partnerships withnational and state nonprofit mental healthorganizations.

NAMI-NYS is responsible for disseminatingNIMH information including the bi-weeklyupdates, latest research findings, andopportunities to participate in clinical trials for the next three years. Designation as anOutreach Partner also allows our members tohave access to NIMH educational materials aswell as participate in NIMH webinars.

In March, NAMI-NYS once again joined nearly ninety researchers, national partnerorganizations, and Outreach Partners fromevery state, the District of Columbia, andPuerto Rico in participating in the NIMHOutreach Partnership Program Annual Meetingin Denver, Colorado. The Annual Meeting bringsthe partners together to learn more about thelatest scientific research and best practices inthe causes, prevention, and treatment ofmental disorders. The meeting also givespartners the opportunity to learn from eachother about programming, collaborating withresearchers and outreach strategies.

During the partner sharing session, MatthewShapiro, NAMI-NYS Development and EventCoordinator, presented on three of NAMI-NYS’unique outreach activities: the Family Survival

Tool Kit; the Stewart’s Shops Coffee Cardcampaign; and the Strike Out Mental IllnessCampaign. Matthew also highlighted the 2011 NAMI-NYS Educational Conference as an example of partnering with researchers and showcasing research findings. During thesession the winter edition of the NAMI-NYSNewsletter was acknowledged as a model forhow to encourage research participation. NIMHcreated a poster with the Newsletter articlethat promoted specific trials along with atestimonial from the Anders family on theirexperience participating in research trials.

Over the four-day meeting, leading researchersand Outreach Partners discussed several areasof current research, including global mentalhealth disparities; genetics; interventions for older adults, teens, military servicemembers, and African American women;family-oriented interventions; and efforts to reduce suicide rates.

Highlights from the meeting included apresentation by Phillip Wang, M.D., Dr.P.H.,Deputy Director of NIMH. Dr. Wang spoke on how mental disorders are the “mostburdensome” class of disorders today,accounting for one-third of all disabilityworldwide.”1 However, companies thattraditionally develop new medical treatments,such as pharmaceutical companies, seem tobe leaving the mental health field. “In largepart,” said Dr. Wang, “this is because theyperceive that the root causes of mental illnessare not well understood, and thereforepotential new treatment targets are not yetknown.” “As a result,” he said, “NIMH is takingon a larger role, increasing support for researchon the causes of mental disorders and the

pathways through which disorders develop thatwill yield new treatment targets. We are facingchallenges in generating new treatments, butthere are also some promising advances.”

Dr. Wang described several encouraging areasof current research that could lead to a betterunderstanding of the mechanisms of mentalillness as well as new treatment targets. Hehighlighted work with induced pluripotent stem cells and faster-acting drugs for treating depression. In addition, he said, “There have been some dramatic advances inunderstanding the genetic risk factors behindmental illness.” Another major advance, hesaid, is the “connectome,” an effort to map theconnections of the brain and provide a newunderstanding of how the brain is wired, madepossible through advanced neuroimagingtechniques.

Dr. Wang also discussed how to frame themessage of research. He reminisced aboutattending the 2011 NAMI-NYS EducationalConference and constantly hearing the mantra “research is the hope for the future.” He discussed how that type of positive spin isvital in promoting research participation and indisseminating scientific findings.

Other highlights included:Keynote speaker Marsha Linehan, Ph.D.,Director of the Behavioral Research andTherapy Clinics at the University ofWashington, who opened the meeting with a personal and inspiring story of how shedeveloped dialectical behavior therapy (DBT)

for people at risk of suicide and those withborderline personality disorder. “Real change ispossible,” she said. With DBT, therapists canhelp people to “build a life worth living.”

Mary Cavaleri, Ph.D of New York StatePsychiatric Institute, gave an interestingpresentation on “Family Peer-to-Peer Support:State of the Evidence.” Dr. Cavaleri detailedhow family peer-to-peer support programs(such as NAMI’s Family-to-Family and Basics)have grown exponentially since 1986 and whyfamily participation is important in research.


NAMI-NYS Development and Event Coordinator,Matthew Shapiro presents on NAMI-NYS outreachactivities at the 2012 NIMH Outreach Partnership

Meeting in Denver

NAMI-NYS Continues Our Partnership with the National Institute of Mental Health

The NAMI-NYS Newsletter is used as an example ofhow to promote research participation

“Real change is possible. With DBT,therapists can help people to “builda life worth living.”– Marsha Linehan, Ph.D.

Nadine Kaslow, Ph.D of Emory UniversitySchool of Medicine, gave a fascinating andmoving presentation on the Grady Nia Projectwhich since the 1990’s has assessed andtreated more than 500 abused, suicidal, low-income, African-American women throughculturally competent interventions.

Stefano Bertuzzi, Ph.D., M.P.H., Director of theNIMH Office of Science Policy, Planning, andCommunications (OSPPC), wrapped up themeeting with a presentation about the role ofthe Outreach Partners and the NIMH resourcesavailable to them. “As the NIMH missionstatement says, we need to ‘transform theunderstanding and treatment of mentalillness,’” he said. “Key aspects of effecting that change, are improving the public’sunderstanding of what research is being done today, and talking about mental health with others.”

Dr. Bertuzzi noted that there are several key messages: “Mental disorders are brain disorders, this is not bad parenting; this is not something that just happens. There are genetic reasons, and developmental reasonsfor mental illness.” Other key messages are:“They often begin early in life, and they can be treated. We have a long way to go, but theycan be treated.” “Finally,” he said “Seek help as early as possible.”

Dr. Bertuzzi closed with a request for help from the Outreach Partners. “We need tochange opinion, change the culture.” Let NIMHknow what you need, he said, what’s going onin the trenches. Dr. Bertuzzi also praised thePartners: “You are changing the world with your actions today.” �

1 World Health Organization. The Global Burden of Disease:2004 Update, Table A2: Burden of disease in DALYs bycause, sex and income group in WHO regions, estimates for 2004. Geneva: WHO; 2008.


NAMI-NYS Receives Grant to Expand Family-to-Family Programming on Long Island by Stephen ObyThe Ann Allen Cetrino Foundation has granted a generous sum of $10,000 to expand Family-to-Family programming on Long Island this year. The funding was awarded due to the course’sunique ability to provide insight into and resolutions surrounding the profound concernsexperienced by families as they strive to cope with the realities of serious mental illness.

This money will be used to fund both training for new teachers on Long Island in 2012, aregional expansion of the program that simply could not have occurred without the CetrinoFoundation’s contribution, as well as a series of Family-to-Family classes on Long Island. This growth could ultimately account for as many as 16 new Family-to-Family teachers and260 new participants.

Under the expert guidance of Bonnie Goldburg, Patti Sacher, and Pam Solomon, the newFamily-to-Family teachers will be trained this fall. �

“Mental disorders are brain disor-ders, this is not bad parenting; thisis not something that just happens.There are genetic reasons, and de-velopmental reasons for mental ill-ness.”– Stefano Bertuzzi, Ph.D., M.P.H.

NAMI-NYS Receives a Grant to Expand OurSignature Programs and Produce a SecondPrinting of the Family Toolkit.NAMI-NYS has received a new grant from the van Ameringen Foundation, Inc., which will allow usto expand our Signature Programming in the New York City Metropolitan area, increase ourprogramming in Spanish, as well as produce a second publishing of the Family Toolkit.

NAMI-NYS looks forward to working with the van Ameringen Foundation, Inc. on our dualmissions of providing education on mental health and increasing the accessibility to mental-health services, for the poor and needy.

NAMI-NYS will accomplish this goal by increasing the accessibility to our Family-to-Family,Basics, In Our Own Voice and Peer-to-Peer courses in the New York City Metropolitan area (whichincludes New York City, Westchester and Long Island). Additionally, NAMI-NYS will be schedulingspecial trainings in New York City to develop Spanish Family-to-Family teachers and Spanish InOur Own Voice presenters. Finally, NAMI-NYS will be producing another 2,000 copies of ourFamily Toolkit for affiliates to distribute in psychiatric emergency rooms and in-take centers.NAMI-NYS estimates that the van Ameringen Foundation, Inc.’s support will allow us to helpapproximately 3,000 people and families.

NAMI-NYS is excited to announce that the first program supported by the van AmeringenFoundation, Inc. grant will be the Family-to-Family course offered by NAMI-Harlem. This coursewill begin on September 1st and will run through November 17th. The class will be take place onSaturdays from 9:30-12 noon at the Harlem StateOffice Building, 163 West 125th Street. As with allSignature Programming offered by NAMI-NYS, there isno charge to participate in the course and you do notneed to be a NAMI member to attend. To register,please contact NAMI Harlem Inc at 212-694-6235.

For more information about the courses and trainings offered through the support of the van Ameringen Foundation, Inc.’s grant, please contact NAMI-NYS ProgramCoordinator Steve Oby by email or phone at 518-462-2000 ext. 106.

NAMI-NYS is grateful to the van AmeringenFoundation, Inc. for the opportunity toincrease our ability to assist New York’sfamilies. �


DR. OPLER, M.D., PH.D.,is an administrator,researcher, educator, and clinician at ColumbiaUniversity Medical Center.He is also an adjunctprofessor at New YorkUniversity School ofMedicine and a specialadjunct research professor In the ClinicalPsychology Doctoral Program at Long IslandUniversity. In addition to being the author orcoauthor of over 200 scholarly articles, Dr. Opleris the Director of Adult Psychopharmacologyconsultation services for the NYS Office ofMental Health and a part of Columbia’s Centerfor Prevention of Homelessness faculty.

Question #1 Can you address the long-termeffects of psychotropic medications?All medications have side effects. Most sideeffects are either (1) reversible if the medicationis stopped and/or (2) can be treated. There are, unfortunately, some irreversible side effects. In treating persons with schizophrenia,schizoaffective disorder, and bipolar disorder,prescribing antipsychotic medication is often a necessary part of treatment. Unfortunately,most antipsychotics can cause tardivedyskinesia (TD), and TD can be irreversible.There are two antipsychotics that do not appearto cause TD. One is reserpine, but it is rarelyused anymore because it can cause seriousdepression. Reserpine causes depletion ofdopamine, norepinephrine, and serotonin. Theother antipsychotic is clozapine, which blocksdopamine receptors in the mesolimbic region of the brain but not in the nigrostriatal region.Clozapine has never been found to cause TDwhen used alone. Further, it often amelioratesTD caused by other antipsychotics.

This is not an FDA-approved indication forclozapine; the FDA has approved clozapine for the following:

1. Treatment-Resistant Schizophrenia

2. Reduction in the Risk of Recurrent Suicidal Behavior in Schizophrenia orSchizoaffective Disorders

Although not FDA-approved for other indica-tions, clozapine has been shown to treat tardivedyskinesa as well as to decrease craving fornicotine, alcohol, and cocaine.

Clozapine has other side effects: all medica-tions have side effects. Clozapine-inducedagranulocytosis occurs in less than one percentof persons receiving clozapine. The rates maybe a slightly higher for Ashkenazi Jews and forpersons of Finnish descent for reasons we arestill trying to understand. We do not know howto identify which individual patient is at risk of developing agranulocytosis, which is why all patients on clozapine must be regularlytested for both total white blood cell (WBC)count and granulocyte (also called neutrophil)count. For the first six months of clozapinetreatment, weekly testing for WBC and ANCcounts are required; for the next six months, biweekly testing is required. Since clozapine-induced agranulocytosis, if it is going to occur, most often happens early in treatment,frequency of testing after the first year is decreased to every four weeks, but anyone on clozapine who develops an infection such as a sore throat should have their total whiteblood cell count and their neutrophil or granulocyes count checked.

In part due to the fear of developingagranulocytosis and in part due to therequirement for ongoing blood tests, clozapineis underutilized despite being our most effectiveantipsychotic.

Question #2 What are some alternatives to lithium?Lithium is an excellent mood stabilizer. In herbook Night Falls Fast Kay Redfield Jamisonpresents compelling evidence that for bipolardepression lithium decreases suicidality morethan other mood stabilizers. Lithium (like allmedications) does have side effects: in somepatients it causes a position tremor making itdifficult to hold one’s hand steady when writingor holding a cup. Blood levels do need to beobtained to make sure lithium level is not toohigh, since lithium toxicity can impair kidneyfunction. Lithium levels should, ideally, neverexceed 1.5 millimoles/liter. Lithium toxicity canusually be avoided if persons on lithium areadvised to avoid dehydration and to not varysalt (sodium chloride) intake dramatically:going on a low salt diet can make lithium levelsincrease, so if a low salt diet is recommended

lithium dose needs to be reduced. Even attherapeutic levels, lithium can increasefrequency of urination and interfere with therelease of thyroid hormone into the bloodstream. Therefore, in addition to obtaininglithium blood levels regularly, it is important to obtain a measure of thyroid function at least yearly and sooner if signs of low thyroidfunctioning (hypothyroidism) occur. The bestsingle test to obtain is the level of thyroidstimulating hormone (TSH): if there is too little thyroid hormone in the blood, the pituitary releases more TSH in order to make the thyroid work harder and producemore thyroid hormone.

Monitored correctly to assure that it does not reach toxic levels, lithium is often the drug of choice for persons with bipolar disorder. But it is good to have other options.The antiseizure drug carbamazepine (Tegretol),although never FDA-approved for bipolardisorder, is an excellent mood stabilizer. Two other antiseizure medications have beenFDA-approved for the treatment of bipolardisorder. Depakote (valproic acid with a coatingthat decreases valproic acid’s tendency toupset the stomach) is particularly effective formania. Lamotrigine (brand name: Lamictal) is approved to treat bipolar depression andusually does so without causing a switch tomania. Other antiseizure medications may alsobe mood stabilizers but have not undergone thetesting required to attain FDA approval.

Several antipsychotics have been approved for the treatment of bipolar disorder. Risperal(risperidone), Zyprexa (olanzapine), Geodon(ziprasidone), Abilify (aripiprazole), and Saphris(asenapine) are approved for mania and mixedstates. Seroquel (quetiapine) is FDA-approvedfor the treatment of both bipolar mania andbipolar depression.

Clozapine, while not FDA-approved for thetreatment of bipolar disorder, is a moodstabilizer, treating both depressive and manic phases.

There is evidence that omega-3 fatty acids in addition to usual treatment improve outcomein bipolar disorder (Stoll et al. Omega 3 fattyacids in bipolar disorder: a preliminary double-blind placebo-controlled trial. Archives ofGeneral Psychiatry 1999; 1999;56:407-412).

N-acetylcysteine (NAC) has been shown toimprove depressive symptoms in bipolar

Ask The Doctor: With Dr. Lewis OplerQuestions and Answers From The NAMI-NYS Educational Conference Held On Sunday, 11/7/2011

Listed are some of the questions

asked of Dr. Opler from the NAMI-NYS

Educational Conference. Unanswered

questions will be addressed in future

newsletters.


disorder (Berk et al. N-acetyl cysteine fordepressive symptoms in bipolar disorder—adouble-blind randomized placebo-controlledtrial. Biological Psychiatry 2008;64:468-475).While NAC inhalant (brand name: Mucomyst) isFDA-approved for the treatment of cystic fibrosisand while injectable NAC is FDA-approved forthe treatment of acetaminophen (brand name:Tylenol) overdose, NAC tablets and capsules are only available as supplements. For mostpatients, 2000-4000 mg of NAC daily, givenwith 500 milligrams per day of Vitamin C, either alone or in combination with some of thetreatments described above, can amelioratebipolar depression without causing a switch into mania.

Finally, electroconvulsive therapy (ECT), despitesome biased negative press, is unique in that ittreats all phases of bipolar disorder: depressed,manic, and mixed. ECT can literally been a lifesaver for patients with bipolar disorder notresponding to medication.

Question #3 Do you have suggestions fortreating weight gain caused by quetiapine? &

Question #4 My daughter has gained 40 pounds since being switched to aripiprazole(Abilify) despite claims that it is “weightneutral”—what can be done about this weight gain?Nearly 25 years ago, my psychopharmacologygroup at the Albert Einstein College of Medicineshowed that amantadine caused weight losswhen given to patients on standard neuroleptics(Correa N, Opler LA, Kay SR, Birmaher B. Amantadine in the treatment of neuroendocrineside effects of neuroleptics. Journal of ClinicalPsychopharmacology 1987;7:91-95). More recently, with concern about olanzapine causingweight gain, amantadine has been shown totreat olanzapine-induced weight gain (Grahamet al. Double-blind, placebo-controlled investi-gation of amantadine for weight loss in subjectswho gained weight with olanzapine. AmericanJournal of Psychiatry 2005;162:1744-1746).Others have found that amantadine can pro-mote weight loss caused by other antipsy-chotics as well, including quetiapine,aripiprazole, and clozapine.

There is also evidence that metformin, approved for the treatment of Type 2 diabetes,and behavioral therapy can prevent weight gaincaused by antipsychotics.

Saphris (asenapine) was recently shown tocause only one pound of weight gain in oneyear as compared to placebo (Kane et al. A randomized placebo-controlled trial ofasenapine for the prevention of relapse of

schizophrenia after long-term treatment. Journalof Clinical Psychiatry 2011;72:349-355).

An important point: no weight reductionprogram should rely exclusively on medication.Diet and exercise should always be included ina holistic treatment plan.

Question #5 Are generic drugs as effectiveas name brand drugs?Most of the time, generics are as effective asname brand drugs. In order to market a namebrand medication, pharmaceutical companiesmust submit a New Drug Application (NDA) tothe FDA; the NDA must include clinical trialsdemonstrating efficacy and safety for theindication the pharmaceutical company isseeking. In this country, the NDA must includetwo or more randomized double-blind placebo-controlled clinical trials.

When the name brand drug goes off patent,since efficacy and safety are alreadyestablished, in order to market a genericequivalent pharmaceutical companies onlyneed to demonstrate bioequivalence. Thismeans that they have to provide the FDA withdata showing that when administered thegeneric equivalent achieves blood levels thatare the same as the name brand drug.

Occasionally, a patient reports that a generic is not as effective as a name brand drug (less frequently, a patient reports that a genericis more effective than a name brand drug): although I am not sure why this is the case, I always honor a patient’s wish to return to a name brand drug. It is also possible that allergic reactions can occur when a patient isswitched to a generic—since the active ingredi-ent is the same, we assume this is due to a reaction to other things in pills, for example the vehicle to which the drug is bound or thedye used to color the pill. In these cases, I willswitch a patient back to a name brand drug.

Question #6 How would you restartclozapine and under what circumstances?Whether initially or after a period ofdiscontinuation, clozapine must be startedslowly and built up slowly. This is because it blocks receptors that cause both sedationand orthostatic hypotension (a drop in bloodpressure on standing or sitting up suddenly).Fortunately, most patients develop tolerance to these side effects, but it takes weeks and in some cases months for this to occur. Thedegree of sedation and of orthostatichypotension is what limits the rapidity withwhich clozapine is initiated, both initially and after a period of discontinuation.

The most common reason for restartingclozapine is that either the patient or a physicianfelt they could achieve the same effects withanother medication as they achieved withclozapine. Given that clozapine is effective whenother medications are ineffective, in most casesa decision is made to return to clozapine and alow dose and slow titration is required.

Sometimes clozapine is stopped becauseneutrophils or granulocytes are decreasing and there is concern that this may be due toclozapine; since there are other medicationsand conditions (e.g., some viral infections) that can lower white blood cell count, if it isdetermined that clozapine was not the “culprit”restarting it is appropriate.

If, however, the total white blood cell count goesbelow 2000 or the total neutrophil count goesbelow 1000, the monitoring system will identifythe patient as someone who must be taken offclozapine and not be restarted.

Question #7 Is there an MAOI transdermalpatch that does not have diet restrictions?Selegiline is available in three different strengthpatches that delivery 6, 9, and 12 milligramsper day (brand name: Emsam).

Selegiline is a monoamine oxidase inhibitor(MAOI). Monoamine oxidase (MAO) is involvedin metabolizing several neurotransmitters,including dopamine, norepinephrine, andserotonin, inhibiting MAO increases the lengthof time these neurotransmitters remain activebefore being broken down. MAO is also presentin the gastrointestinal tract (GI), and if MAO is inhibited in the GI and someone ingestssubstances with high amounts of tyramine,tyramine will also be metabolized more slowly.This can result in what is called “hypertensivecrisis.” (Tyramine is referred to as a “pressorsubstance” because it can cause a rapidincrease in blood pressure.) Tyramine is foundin aged cheese, beer, and ale, so these areamong the foods and beverages that need to be restricted if someone is on other MAOIssuch as phenelzine (Nardil), tranylcypromine(Parnate), or Marplan (isocarboxazid).

Because at daily doses below 10 milligrams,selegiline inhibits the MAO found in the brain (MAO B) but not that found in thegastrointestinal tract (MAO A), as long as dosesare kept below 10 mg/day, selegiline appearsto be safe even if dietary restrictions are notobserved. However, at higher doses, selegilinebecomes less selective and can inhibit MAO A.Selegiline is available so if one applies patchesthat deliver more than 9 mg/day, the diet doesneed to be observed. �


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Puerto Rican and Hispanic Somos Conference a Success!The 25th Anniversary Celebration of the NewYork State Puerto Rican and Hispanic SOMOSconference which took place March 23rd-25th,proved to be one of the best in the conference’shistory, and one that NAMI-NYS was proud tobe a part of. New York State Assembly/Senate

Puerto Rican & Hispanic Task Force ChairmanFelix W. Ortiz said “I was proud to see the recordnumber of people who came to Albany today toparticipate in our conference.”

NAMI-NYS had a table staffed throughout theevent, and distributed hundreds of educational

pamphlets and brochures. Particularly popularwere our materials printed in Spanish.

NAM-NYS congratulates the Task Force on thissuccessful event, and we look forward toparticipating again next year. �

Sharon Clairmont and NAMI-NYS Board President Sherry Grenz at Information Table

NAMI-NYS Interns Jordan and Shahara Present Information

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