MS Connection Spring 2009

MOVING TOWARD A WORLD FREE OF MS | SPRING 2009

INSIDE THIS ISSUE

NORTHERN CALIFORNIA CHAPTER

RESEARCHPAGE 4

ADVOCACYPAGE 12

VOLUNTEERPAGE 15

PROGRAMSPAGE 17

ALL IN THE FAMILYHOPE IS IN OUR GENES

In 1986, Kelly Alameida started falling. After visiting her pediatrician and undergoing a series of tests, the then 12-year-old Kelly was diagnosed with multiple sclerosis. Kelly and her family were shocked by the news, but Kelly’s symptoms were mild and she was able to continue embracing life to the fullest. She served on the high school basketball team and attended college at Chico State, where she studied Childhood Development. After college, Kelly was an active member of her community, working as a special education teacher, walking in Walk MS events, and being very active socially.

The Alameida family was dealt another blow in 1998, when Kelly’s mom, Kathy, was diagnosed with primary progressive MS. And in 2007, Kelly’s identical twin, Kim, was told that she, too, shared this family disease,

CONTINUED ON PAGE 4

ADVENTURES IN ADVOCACYBY TAMMY PILISUKWhat was it like to go to the 2009 NMSS Pubic Policy Conference? For me, it was a

bit like old homecoming week, seeing friends from prior years. Plus, it was fun to meet folks who are doing this for the first time. My advice to them: bring your passion and personal experience. The rest is easy to learn, but be careful—advocacy can become habit forming.

My journey in MS advocacy has been a long one, nearly 20 years now. I do it because it’s part of the skills I learned in public health school and I spent many years working on long-term care and family caregiving issues. I also do it because of what my family has experienced with MS, the disease my mom has had since before I was born.

Sometimes you stumble into something that takes on more meaning than you might have

CONTINUED ON PAGE 12

JOIN THE NATIONAL MS SOCIETY’S

Be a part of a group of forward thinking people who know that the quest for a world free of MS must continue. The Lawry Circle honors donors who have informed the Society of their intention to help create a better future for people with MS through a gift from their will, trust, or estate plan.

The Lawry Circle is named in honor of the Society’s Founder, Sylvia Lawry. Her motivation was to cure her brother Bernard of MS. Because of you, Sylvia’s work will continue.

If you have included the Northern California Chapter in your estate plans, please inform the Society of your intentions by contacting Janelle Del Carlo, Executive Vice President at 415-230-6678 ext. 2001 or [email protected].

MS CONNECTION SPRING 2009

National MS SocietyNorthern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158

415-230-6677 | 800-344-4867

Chairman • Thomas Galizia Chapter President • David Hartman Newsletter Editor • Julie Legrand

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS.

© 2009 National MS Society, Northern California Chapter

CHAPTER RECOGNIZED FOR EXCELLENCE IN ACTIVISMThe Northern California Chapter was one of the five chapters across the nation to be recognized for its leadership in mobilizing activists as leaders in health care reform and was granted an award for Excellence in Activism.

Congratulations to the entire advocacy team for all the work they do at the state and federal level on behalf of those living with MS.

2 JOIN THE MOVEMENT: nationalMSsociety.org

PRESIDENT’S UPDATE: RESOURCES HAVE DECREASED AND NEEDS HAVE INCREASED

Let’s face facts. Times are tough. And we at the National MS Society, along with most nonprofit organizations in the country, are not immune to the effects of the economic downturn.

Today fewer people are able to give and those who give are giving less. Our corporate partners have cut their budgets for cause-related marketing and community support and foundations have much smaller portfolios and thus less to give.

But MS doesn’t slow down when the economy does. People with MS and their families need the National MS Society now more than ever. Requests for financial assistance have nearly doubled compared to last year and we expect to see a continued increase in requests at all levels. Consider these facts: 70 percent of people with MS have trouble paying for their health care. Twenty-one percent of people living with MS spend less on food, heat and other necessities just to pay for their care.

A hopeful timeWhile the economic situation is of great concern to most Americans, I believe that now is an incredibly hopeful time for the MS community. MS research is progressing at a remarkable rate, with more potential therapies in the pipeline right now than at any other time in history. Thanks to generous support from our donors, the National MS Society is currently funding

over $12.6 million in grants to institutions right here in Northern California. But there is so much more that needs to be done to achieve a world free of MS.

On an advocacy front, the MS movement is better positioned

than ever before. President Obama and his wife Michelle are well aware of the challenges of living with a chronic disease. Moreover, the National MS Society has the support of Congress and the understanding of the White House for our Health Care Reform Principles. Here in California, we will be taking the State Capitol by storm in April at the Cal Neuro Alliance conference advocating for durable medical equipment coverage in healthcare plans, a Safe Sharps Disposal bill, and protection of the Medi-Cal safety net.

So, what can you do?Join the movement, get involved…

You can make a difference! With your support, the National MS Society provides essential programs and services that address the challenges faced by people affected by MS and drives research to find the cause, cure and treatments for MS. Whether you volunteer, bike, walk, advocate, educate, or donate, every action is a meaningful way to serve and demonstrate your commitment to improve the lives of people living with MS.

PRESDEN

T’S UPD

ATE

JOIN US IN MOVING TOWARD OUR DESTINATION—A WORLD FREE OF MS!

3TOLL FREE NUMBER 1 800 344 4867

and had the relapsing remitting form. While Kelly was originally diagnosed with the relapsing remitting form of the disease, after 20 years her symptoms worsened and she was rediagnosed with secondary progressive. Kelly now uses a power chair to help her move around and lives with her parents, but she remains hopeful and optimistic. Kathy no longer has use of her limbs and has trouble seeing, yet she continues to be positive. Kathy and Kelly live with father Joe, who is dedicated to caring for mother and daughter. Kim continues to work while raising twin four-year-old boys and lives nearby. Other than a bit of trouble walking when she is fatigued, she’s doing well.

Like so many others, Kelly, Kathy and Kim wonder how it is that each of them ended up being one in 750 people who have developed MS. Yet they continue to hold out hope: hope that researchers will find new treatments for them; hope that there will be a cure for this debilitating disease.

The genetic linkFor Dr. Stephen Hauser, their hope is held within their DNA. Dr. Hauser is the chair of Neurology at University of California, San Francisco, and is a leader in the international effort to identify genetic causes of MS. Dr. Hauser believes that genetic studies will make MS a simpler disease for us to study and will get us to the root cause of what begins the inflammation in MS.

Dr. Hauser was among the first MS researchers in the United States to recognize the need to study genetic influences that make people susceptible to developing MS. With funding from the National MS Society, he established a DNA bank to carefully gather and store a large number of blood samples from people with MS and their family members. This vital resource is shared with researchers around the world

studying MS susceptibility. Dr. Hauser’s work has also led to the formation of the International MS Genetics Consortium (IMSGC). This group of MS genetics researchers from around the world has broken new ground, recently completing the largest replicated whole genome scan (scan of all the genes in the body) for MS to date and identifying two new genetic variations associated with MS.

Although Dr. Hauser believes that there are probably around 50 susceptibility genes for MS (making it a polygenetic disease), he thinks that identifying these genes will not complicate the MS picture. Instead, it will likely lead us to a much simpler view of disease pathways, better treatments, and prevention.

The family connectionWhile MS is not directly inherited, genetics play an important role in who gets the disease, how they respond to therapies and possibly what course the disease will take. According to Crystal Anglen, Ph.D., volunteer Research Advocate for the National MS Society’s Northern California Chapter, “We know that just because one has the susceptibility genes for MS does not mean they will get the disease. The general consensus among researchers is that some additional environmental trigger must occur for someone who has MS genes to actually develop the disease.”

Population studies have taught us that MS tends to aggregate in certain families and that genetic, not environmental, factors are primarily responsible for this type of aggregation. The risk for offspring to develop MS is higher when the mother has MS. It is also known that the sibling of a person with MS also has an increased risk for MS. The risk for identical twins is even higher. When Kelly Alameida was diagnosed at age 12,

CONTINUED ON PAGE 7

HOPE IS IN OUR GENES FROM PAGE 1


RESE

ARC

H

ACTIVE RESEARCH GRANTS IN NORTHERN CALIFORNIAEach year, the National MS Society devotes nearly $50 million to fund key research initiatives to help fuel novel ideas, potential therapies, projects, and technologies to discover and pursue every avenue that holds promise. Much of this research is done in our own backyard, with over $12.6 million in active research grants being funded with Northern California institutions such as UCSF and Stanford.

Lawrence Steinman M.D.Stanford Medical Center Collaborative MS Research Center Award $825,000 Jorge R. Oksenberg Ph.D.University of California, San FranciscoCollaborative MS Research Center Award $825,000 Roopa Bhat M.D., Ph.D.Stanford Medical Center The role of gamma amino butyric acid in EAE and MS $114,877 Kareem L. Graham Ph.D.Stanford University The role of the orphan receptor L-CCR in a murine model of MS $142,471 Kelly Monk Ph.D. Stanford University Medical CenterMolecular mechanisms governing node of ranvier formation $134,325 Junryo Watanabe Ph.D. Stanford University Medical Center

Role of transferrin in promoting oligodendrocyte differentiation and remyelination in MS $142,471 Joseph McElroy Ph.D. University of California, San FranciscoGenomic copy number variation associated with MS in whites and African Americans $102,324 Dimitrios Davalos Ph.D. The J. David Gladstone InstitutesStudy of microglial activation to blood proteins using in vivo two photon microscopy $156,515 Robert C. Axtell Ph.D. Stanford Medical Center Interplay between interferon-gamma and interferon-beta in experimental autoimmune encephalomyelitis $144,218 Ellen M. Mowry M.D.University of California, San FranciscoFellowship in clinical investigations in MS $100,000

Daniel Pelletier M.D. University of California, San FranciscoBrain atrophy study using MR markers of axonal, myelin and glial contents $674,725 Radhika Srinivasan Ph.D. University of California, San FranciscoQuantitative assessment of glutamate homeostasis in MS using MRSI $44,000 Sergio E. Baranzini Ph.D. University of California, San FranciscoRegulation of gene expression in MS through the analysis of microRNA patterns $44,000 Richard W Price M.D.University of California, San FranciscoPilot study of natalizumab effect on CSF cell kinetics, cytokines and T Cell gene expression $44,000 William S. Talbot Ph.D. Stanford University Medical CenterEstablishing zebrafish as a


RESEARCH

model to study the role of astrocytes in myelination $44,000 Stephen L. Hauser M.D. University of California, San FranciscoSupport of a core DNA repository for MS $878,962 Jorge R. Oksenberg Ph.D.University of California, San FranciscoGenetic mapping in MS $579,533 Jorge R. Oksenberg Ph.D.University of California, San FranciscoFamily based genetic studies in ethnically distinct populations $558,770 Emmanuelle Waubant M.D., Ph.D. University of California, San FranciscoPredicting factors of the recovery from initial demyelinating event, and time to subsequent clinical event $468,338 Lawrence Steinman M.D. Stanford Medical Center Antibody to osteopontin for treatment of MS $555,733

Mark Agius M.D.University of California, Davis Cannabis for spasticity in MS: placebo-controlled study $305,422 Katerina Akassoglou Ph.D.The J. David Gladstone InstitutesA strategy to inhibit microglia activation in inflammatory demyelination $58,337 Scott S. Zamvil M.D., Ph.D.University of California, San FranciscoB cells in CNS autoimmune disease $463,886 Karla Kirkegaard Ph.D.Stanford University Molecular basis of murine susceptibility to virally induced demyelination $488,443 Samuel Pleasure M.D., Ph.D.University of California, San FranciscoRegulation of OPC specification by Sox10 $492,109 Emmanuelle Waubant M.D., Ph.D. University of California, San FranciscoNeuroprotection with riluzole

in patients with early MS$748,466 Ben A. Barres M.D., Ph.D.Stanford University Medical CenterSignaling mechanisms that control the blood-brain barrier $535,128 William S. Talbot Ph.D. Stanford University Medical CenterGenetic analysis of the node of Ranvier in zebrafish $493,330 Wenbin Deng Ph.D. University of California, Davis Mechanisms of microglial activation underlying EAE $453,255 Sergio E. Baranzini Ph.D.University of California, San FranciscoThe MS transcriptome: Functional genetic analysis of MS $1,200,436 Scott S. Zamvil M.D., Ph.D.University of California, San FranciscoType II monocytes in T cell-mediated CNS autoimmune disease $805,737

FROM PAGE 6


RESE

ARC

H

Hope is on the horizonKelly and Kim have both recently submitted blood samples to Dr. Hauser’s DNA bank at UCSF. The answers to many questions about MS may be hidden somewhere in their genes. Our hope is that the team at UCSF can uncover those answers.

Scientists believe that genetics research is likely to identify new genes in the immune system, and allow us to develop treatments aimed toward newly identified therapeutic targets. It is very likely that we will soon have some

new therapeutic opportunities as a result of the genetics research and better understand the genetic basis for why some people respond to some medicines and not to others. For example, it is possible that within a few years we will be able to customize therapeutic options for individual people based on their

genetic background. The main hope for genetics research is to identify those at risk for developing MS and either stop MS progression in the early stages or prevent its occurrence entirely.

Genetic research gives the Alameida family and everyone living with MS great hope that better treatments are on the horizon. “A new genetic discovery could be for the MS community like what the walk on the moon was to NASA,” said Dr. Hauser. “I think a discovery like this would revolutionize our understanding of the early developments in MS, could bring to all of us new treatments, and perhaps down the road even give us cause to believe we could prevent MS from occurring before it even begins. I think that the future is very bright.”

doctors told her family that Kim had a 25 percent chance of also developing the disease. Studies of female identical twins have found that if one twin developed MS, the other twin was at risk of developing MS symptoms within about 5 or 6 years; if they passed that window there was a good chance they wouldn’t develop MS at a later age. Unfortunately for Kim, this was not the case.

The case of the Alameida family offers more questions than answers: What is the gene or genes that Kelly, Kim, Kathy all share that made them susceptible to MS? What were the environmental factors that triggered the onset of MS for Kelly in 1986, Kathy in 1998, and Kim in 2006? Why does each family member have a different form of the disease?

According to Dr. Anglen, the Alameida case is especially interesting given that they are identical twins. “It suggests that either the susceptibility genes they have are different from one another (to predict a different course or type of disease), or they experienced their environmental ‘triggers’ at different times, or both. The timing of the triggers is very important here, as is the nature of the susceptibility genes.”

Dr. Anglen explains: “It’s very likely that certain susceptibility genes are specific for each form of MS, or at least specific for disease progression. Each form has its own appearance timeline. This brings up the important point that MS is a very polymorphic disease, and that one person may not experience it the same way as another.”

RESEARCH

Kelly Alameida, Kim Alameida Vialpando, Joel Vialpando, Jonathan Vialpando, Joe Alameida, Jacob Vialpando and Kathy Alameida


You’ve seen it—the ripple effect you get when you throw a stone in a pond. Such small, easy movements, but those little waves eventually reach all the way to the edge of the pond. Just as stones in a pond, the simplest of efforts can have powerful and far-reaching effects.

We’re passionate about eradicating multiple sclerosis. We know you are, too, but we have a surprising statistic to share. Based on last year’s Walk MS records, only about 4% of those living with MS are participating. That means 96% of those who have the most to gain are not involved.

So this year, we’re calling on everyone (and that means you!) to put their passion into action and join the movement to end this devastating disease by walking, fundraising, and spreading the word about Walk MS.

• Donate at walk.MSconnection.org and experience what happens when thousands of people who share our vision let the light of hope shine.

• Do you already have a commitment the day of your local walk? Donate as a virtual walker. Commit to raising funds just may lead to a breakthrough therapy.

We don’t need to tell you what it would be like to live in a world free of MS, but we do need you to make it a reality. Fundraising continues after the event. Keep asking your family, friends, co-workers and others who care about you. People want to support those they care about.

“By participating in Walk MS, I felt a sense of control and empowerment. I no longer live with MS, MS lives with me.”

— Staci, diagnosed in 2005

CALENDAR OF EVENTS Saturday, April 18th

San Jose: Arena Green

Sunday, April 19th

Monterey Bay: Lover’s Point Park

Saturday, April 25th

Alameda: Crown Memorial Park Eureka: Downtown Eureka Modesto: Downey Community Park Rocklin/Roseville: Adventure Christian ChurchYuba City: Kingswood Park

Sunday, April 26thWalnut Creek: Heather Farm Park Sacramento: West Steps of the State CapitolSan Francisco: Crissy Field Santa Rosa: Druids Hall

The ripple effect has to start somewhere. We hope it’s with you. Go ahead—walk, roll or stroll. Because if not you, then who?

For more information on how to donate visit walk.MSconnection.org or call 1-800-344-4867.

WALK MS: IF NOT YOU, THEN WHO?

SPEC

IAL

EVEN

TS


VOLUNTEER TODAY…THE MOVEMENT NEEDS YOU!National MS Society, Northern California Chapter welcomes volunteers and interns with a wide range of talents and skills.

Call Shannon Gorman at 415-230-6678 ext. 2020 or visit www.msconnection.org and click on Volunteer.

Become involved today and join the movement towards a world free of multiple sclerosis.

Northern California

SPECIAL EV

ENTS

Join us for the 8th annual DuskBuster event to wipe out multiple sclerosis. DuskBuster is the brainchild of this year’s Dinner of Champions honorees Will and Brad Marks. Since its inception, over 1500 people have participated in the event and it’s raised over $300,000 to help fund research and provide programs and services to address the challenges of people affected by MS.

Race t-shirts are included for all participants and prizes for top male/female finishers. Baby strollers are welcome. Refreshments and snacks are provided at race end.

Please contact [email protected] with questions.

DUSKBUSTER 5K RUN/ 2 MILE WALK WEDNESDAY, JUNE 3RD, 2009 AT 7PM GOLDEN GATE PARK SOUTH TUNNEL OF POLO FIELDS SAN FRANCISCO FEE: $30


MS AWARENESS WEEK March 2nd through 8th was MS Awareness Week. This year’s theme was move it and was all about encouraging people to move to end MS.

Our Chapter staff and volunteers were out and about all over Northern California getting the word out. On Monday, March 2nd, dozens of us stormed the State Capitol in the pouring rain and filmed an awareness video that can be viewed from the Take Action section of our website at www.msconnection.org/advocacy.

We also encouraged our MS community to spread the word in other ways, including creating an “Orange You Curious” campaign where volunteers displayed bowls of oranges with signs and literature in their office or other public places to generate awareness for our movement. People all over the Bay Area got to see our volunteers in their finest orange attire all week, be it for “Orange Effect” Friday, or at one of our street teams at BART, the San Francisco Ferry Building, or Santana Row in San Jose.

Thank you to everyone who participated in MS Awareness Week this year; we hope to see you in your orange again in 2010.

HOST A LUNCH & LEARN!A Lunch & Learn is a great tool to use to recruit people your workplace to join the movement. We will come to your office with some pizza and drinks (LUNCH) and talk about multiple sclerosis, the National MS Society, and our Chapter’s programs and events (LEARN).

If you are interested in hosting one of these events, speak with your human resources or community relationship department. Ask them to contact Sam McIlraith at 415-230-6678 or [email protected] to schedule a Lunch & Learn with us.


On March 4th, our chapter hosted its annual Dinner of Champions event and raised over $217,000 for MS research, programs, and services. The dinner at San Francisco’s elegant Westin St. Francis hotel honored the community achievements of Paul Otellini, President and CEO of Intel, and the Fillmore and Barbara Marks Family. Paul Otellini was awarded with the Hope Award, the Society’s most prestigious honor, which is bestowed on a community leader who has demonstrated excellence in business and community service. Otellini has been an inspirational leader in the Bay Area for many years, and the National MS Society was very pleased to honor him for his outstanding philanthropy, innovative service and business leadership. Upon receiving his award, Otellini gave a poignant speech sharing many examples of how technology can help end MS. “Exciting advances are coming,” said Otellini. “I believe the day is coming when, like polio and smallpox, multiple sclerosis is a thing of the past. Technology is aiding advances across the spectrum of MS issues, from wheelchairs to wireless networks, and progress is being made.

Positive results are the best sign that a research effort warrants additional support and we have no shortage of encouraging signs.” We also honored Fillmore and Barbara Marks and their three sons, Doug, Will and Brad. Since Barbara’s diagnosis with MS, the entire family has been dedicated to creating a world free of MS. For over 20 years, Fillmore has served on our Board of Trustees and his steadfast leadership and commitment to fundraising have helped to ensure that we can continue to dedicate resources towards supporting cutting-edge research while providing programs and services to the over 140,000 people that we serve in Northern California. In 2002, two of Fillmore and Barbara’s sons Will and Brad followed in their footsteps and spearheaded the annual DuskBuster 5K run in Golden Gate Park to raise awareness and money to put an end to MS. In the seven years since, over 1,500 people have participated in the run and over $300,000 has been raised for our chapter. The dinner program, emceed by Dianne Dwyer also featured a video highlighting the impressive research efforts by UCSF and an

2009 DINNER OF CHAMPIONS: HONORING PEOPLE WHO MAKE A DIFFERENCE

Emcee Dianne Dwyer of NBC Bay Area News and Board member Doug Richardson

Honorees from the Fillmore and Barbara Marks Family with Board Chair Tom Galizia (left) and Chapter President David Hartman (right)

Honorees Paul Otellini, CEO of Intel and Barbara and Fillmore Marks, Board Member


eloquent speech by Board member Doug Richardson. Doug shared real life experiences that demonstrated how adaptive technologies can help people with MS maintain their independence, improve their quality of life, and stay connected to their communities and the world. The dinner’s Fund-In-Need request for adaptive technology brought in over $20,000 and 100% of these funds will directly benefit the National MS Society’s clients in Northern California.

It is with gratitude that we thank the Dinner of Champions volunteer leadership. Thank you Dave Korn for being our Honorary Chair, to our Honorary Co-Chairs, Nancy Bechtle, Lynn Fritz, and Walter Newman, and to all members of the Patron Committee: Angie Lai, Dave Hultman, Cynthia Schwabacher Jamplis, Brad Marks, Will Marks, and John Staples. We are also most thankful to all trustees and donors who made a gift to the Dinner.

ACCEPT THE CHALLENGEAN UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS.

September 12 & 13 1 or 2 day options from 40 to 175 miles Register at: www.wavestowine.org 800-344-4867

An unforgettable two-day journey from San Francisco via Highway 1 into Healdsburg. Enjoy six full meals, generous amenities, stocked rest stops every 12 to 15 miles, SAG vehicles, spirited festivities, a wine & beer garden, massage tent, and more.

THANK YOU ALSO TO OUR

GENEROUS SPONSORS:

Matt Wherrett, DOC Committee member and Board Member Angela Lai, DOC Honorary Chair Dave Korn, and Anita Korn.

Board member Tony Delizza, Dringa Bengamin, Carla Hultman, and Board member Dave Hultman

Naomi Mann, Anisya Fritz, Anne Taylor

thought. That’s my case. In early 2008, attending the first-ever National MS Society’s Federal Activism Council (FAC) meeting, I found myself presenting a proposal for the Society to make health care reform part of its public policy agenda—emphasizing the needs of people with chronic conditions.

I could not have been more pleased that this would become a top advocacy priority for the Society in 2009. Thanks to the talents of my FAC colleagues and leadership at the National MS Society, each and every participant at this year’s Public Policy Conference had our Health Care Reform Principles in hand and ready to share with hundreds of members of Congress.

On day one of the conference, speakers gave some context. to our prospects for success. With any luck, this would be a monumental year. After all, 2009 brings a political sea of change, strong leadership from a new President, and a bad economy made worse by a growing health care crisis. In other words, our timing was perfect.

On day two we all headed for Capitol Hill. If I could paint a picture, it would be a steady stream of activists sporting bright orange scarves and neckties walking, or rolling, through the

halls. Believe me, we stood out. And, I think we all cheered each other on.

I got to speak from the heart and I felt that every aide I talked to listened to what I had to say. My “Senate team” from California

was outstanding. Our visit to Senator Barbara Boxer’s office got into some of the details that make health care reform so important—things like explaining what it’s like to fight an insurance company to get covered for an off-label drug, why coverage caps discriminate against anyone with an ongoing medical need, and why we cannot neglect long-term care. Our support of legislation to establish an MS-Parkinson’s disease registry and a push for more MS research funding were also well-received on the Hill.

Of course, advocacy is a long and uphill battle. I do believe that the Public Policy Conference gives our greater MS community an excellent opportunity to have a strong and unified voice. This can only serve us well for the challenges we have yet to overcome.

Tammy Pilisuk is the Government Relations Committee Chair for the Northern California Chapter. Tammy holds Master of Public Health from U.C. Berkeley and is a member of the National MS Society’s Federal Activism Council and Advisory body to the Society’s Public Policy Office.

ADVENTURES IN ADVOCACY FROM PAGE 1


AD

VO

CACY

Congresswoman Barbara Lee (D-CA 9th) with Stewart Ferry, California Statewide Director of Advocacy and Shawn O’Neial Vice President, Federal Government Relations

MS Activists on Capitol Hill

AD

VO

CACY

TAKE ACTIONYou don’t need to visit the U.S. Capitol for your voice to be heard in Washington. Let your representatives in the U.S. House and Senate know what issues are important to you by picking up the phone, writing a letter, or sending an email on two of this year’s top advocacy issues.

1. Encourage your representatives in Washington DC to support comprehensive health care reform by sending them a copy of our Health Care Reform Principles, which can be found on our website under “Take Action” (www.msconnection.org/advocacy). Too many people with MS do not have access to care and too many cannot afford medications or other treatments. It’s essential that these needs are met in upcoming healthcare reform legislation.

2. Ask your Members of Congress to sponsor H.R. 1362 which creates a Disease Registry Act for MS and could help uncover and inform promising areas of research, such as geographic, genetic or environmental risk factors, and could lead to new treatments.

To locate your Representative in Washington, contact your county elections department or visit www.house.gov or www.senate.gov.


MAY 27, WORLD MS DAY: A CALL TO ACTION

A minimum of two million people worldwide live with MS. This year, for the first time, 80 MS organizations around the globe are taking part in World MS Day on May 27, 2009.

In the United States, with the opportunity for health care reform a real possibility, and the Society is asking all supporters of the MS movement to contact their federal legislators on World MS Day and voice support for universal health care coverage.

For more information on participants and activities, visit worldmsday.org.

CALIFORNIA NEURO- ALLIANCE CONFERENCE April 26th to 28th in Sacramento—The 9th Annual California Neuro Alliance Conference will bring together consumers, caregivers, agency staff, healthcare professionals, and people affected by neurological disorders.

The conference, held annually in the State Capitol, addresses emerging public policy issues that affect people with neurological disorders, and provides an opportunity to hear from key decision makers and state department directors first hand. Conference attendees also will participate in advocacy training and, with other alliance members, visit legislators at the state capitol.

For more information, please contact Stewart Ferry at 415-230-6678 ext. 2003 or [email protected].

PHIL RIDES FOR MSPhil Keoghan, host of CBS’s “The Amazing Race,” is cycling across America–and he’s taking the Society with him. Join Phil on his ride! Visit philridesacrossamerica.com for more information.

AD

VO

CACY


ACTIVISTS SECURE $5 MILLION FOR MS RESEARCHMS activists made history last fall when they moved Congress to approve $5 million for MS research through the Congressionally Directed Medical Research Programs (CDMRP). This is the first time that MS has received a line item allocation under CDMRP, which is funded through the Department of Defense (DOD).

Activism victoryThe movement to obtain MS research funds from the DOD began in late 2006 when activists collected more than 100,000 signatures.

Activists participated in hundreds of congressional meetings, took the case to the media and town hall forums, and collaborated with members of the American Academy of Neurology, the Paralyzed Veterans of America, United Spinal, AMVETS, the Vietnam Veterans of America, and the Disabled American Veterans to petition Congress.

COALITION MOVES TO END THE MEDICARE WAITIn November 2008, more than 75 organizations, including the National MS Society, launched a national campaign to end the two-year waiting period for health-care coverage through Medicare that follows a person’s initial approval for Social Security Disability Insurance.

An unjustifiable delayThe newly formed Coalition to End the Two-Year Wait released a letter to members of Congress, urging them to end the “unjustifiable delay” for Medicare. The coalition declared its support for the Ending the Medicare Disability Waiting Period Act, sponsored by Sen. Jeff Bingaman (NM) and Rep. Gene Green (Tex.). Green attended the kickoff event on November 12, 2008. When the 111th Congress convened this January, the bill was reintroduced in both the House and Senate. The bill had wide support during the 110th Congress with 103 co-sponsors in the House and 23 in the Senate.

“Sick and uninsured”In a statement for the coalition, Yvonne Brown described her long and awful journey to get

health-care coverage after her diagnosis with MS in 2000.

“I had nearly 40 unfilled prescriptions that would have helped treat my MS and associated symptoms,” she said. “I would take one pill every other day rather than two pills twice a day to stretch my supply. With my disease-modifying drug, I would administer that injection every other week instead of once a week as prescribed. Because of this constant worry, I developed severe hives, all due to the stress of unpaid medical bills, being homeless, being sick and uninsured.”

Too high a costAccording to the coalition, 1.5 million people are waiting for Medicare coverage. Brown is now insured through Medicare. But, she said, “I struggle daily with the devastating financial effects and health consequences of living through the Medicare two-year wait period.”

Get movingTo learn more about the coalition and get involved in MS advocacy, visit nationalMSsociety.org/advocacy, where you can sign up to receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters.


Sixty-three years ago this month, a sister loved her brother so much that she placed a small classified notice in The New York Times that read: “Multiple Sclerosis. Will anyone recovered from it please communicate with patient.” Well, no one answered who had been cured but many answered with the hope of a cure. The responses demonstrated to Sylvia Lawry that there was a need for an organized effort to stimulate and finance research into the cure, treatment, and cause of MS. The result was that Ms. Lawry, a lone young woman, gathered 20 of the nation’s most prominent research scientists and founded what would become the National Multiple Sclerosis Society. On March 21st, a son’s and brother’s love showed similar resolve to keep searching for the cause and cure of MS when Bay Area musician Chris Anthony broke a Guinness Record™ to raise funds and generate awareness for MS. In 1976, Chris’s father, Gary Anthony, was diagnosed with multiple sclerosis. In 2000, his sister Kathy was also diagnosed with MS. Chris recalls getting inspired to do something about MS while watching children selling Girl Scout cookies on the Today Show. “I can do that,” he decided. “I saw how much people were willing to give. If those young girls could sell thousands of cookies, then I could

find a way to motivate people to do something about MS. My hope in organizing events like this is to raise awareness, but even more to show that the average Joe can make a difference in the fight against MS.” Over the years, Chris has raised over $40,000 for the Society through various events, including golf and bowling events; however this year, he decided to play to his strengths and use music

as the focal point of his next. fundraiser. Chris holds a degree in Percussion Performance from the Oberlin Conservatory of Music and has years of experience in the Bay Area music scene, including 11 years as Music Director for From The Heart Music, an after school music program for children. Today he

is the sole proprietor of True Beat Music Services, which provides private instruction in percussion and piano, as well as an active freelance percussionist and as drummer for the classic rock band, “The Conniptions”. Leveraging his contacts in the Bay Area music scene, Chris organized “The Beat Rolls On” charity event where he broke the Guinness World Record™ for the longest individual consecutive drum roll at the Tierra Linda School in San Carlos, CA. Starting at 9:16 am, Chris beat the

VOLUNTEER SPOTLIGHT: “AVERAGE JOE” MAKING A DIFFERENCE

LOCAL MUSICIAN SMASHES GUINNESS RECORD™ FOR LONGEST CONSECUTIVE DRUM ROLL AND RAISES FUNDS FOR NATIONAL MS SOCIETY

VO

LUN

TEER

Chris Anthony with sister Kathy

existing record of 1 hour, 22 minutes, 5 seconds at 10:38 am before stopping at 1:22 pm. While the record award has yet to be verified by Guinness, Chris’s time of 4 hours, 6 minutes, and 10 seconds, more than triples the previous record.

Following his record breaking performance, Chris led a cast of musicians, students, and members of the local community in a public drumming for dollars fundraiser to benefit the National MS Society, Northern California Chapter. The day’s activities also included a silent auction and raffles for valuable prizes donated by many Bay Area businesses, restaurants, wineries, and community service organizations.

“While my arms started to go numb shortly after breaking the existing record, by the time I tripled that mark I felt elated, rejuvenated and ready for more,” Chris recalls. “We had a great turnout and were able to raise awareness as well as much-needed funds to bring an end to MS.”

Organizing an event like this on one’s own is nearly impossible, but Chris recruited many friends and family members to support him on his quest which made it easy. Joining Chris in his quest included Scott Marx of XRAM

Communications to help with media outreach, Lori Clark, a freelance film and video producer to produce the event, and many others who volunteered their time and talent.

Chris’s love and compassion for his family, combined with an innate desire to give back, continues to drive his personal fight against MS. So far, the event has raised nearly $10,000, but Chris has big plans to continue to campaign as he drums up more awareness and dollars to bring an end to multiple sclerosis.


VO

LUN

TEER

CREATE YOUR OWN EVENTOur chapter is ext.remely grateful that these companies and individuals Joined the Movement and are working toward a world free of MS through a community event or fundraising activity.

If you are interested in joining the movement and supporting the critical work of the National MS Society through a community event or fundraiser, please contact Julie Legrand at [email protected] or 415-230-6678.


PROG

RAM

S

Our current economy has put a great deal of strain on many families living with MS in Northern California. In the past year, our chapter has experienced a huge growth in number requests for direct service. Our staff members and volunteers are working harder than ever to ensure that assistance is provided to these families and that we are helping families stay connected to the services that they need.

Thousands of medical providers, government agencies, and non-profit organizations are working tirelessly throughout the state to bring services to people in need. The Northern California Chapter of the National MS Society needs your help to connect members with these resources.

The CSI program is the National MS Society’s information and resource gathering program conducted by trained volunteers known as Community Service Investigators (CSI). CSIs are trained to go out into their communities and identify the resources that will useful for people living with multiple sclerosis.

By volunteering as a CSI, you will help to maintain the connections that the chapter has built with other service providers and help build new partnerships in your community. These relationships can significantly increase the amount of support that we are able to offer to families living with multiple sclerosis.

The ideal volunteer for this position should have intermediate computer skills, effective verbal and written communication skills, strong organizational skills, and the ability to represent the National MS Society in a professional manner.

We are accepting volunteers anywhere in Northern California and are especially interested in volunteers who have knowledge or experience of the following counties:

• Alpine • Amador • Calaveras • Colusa • Del Norte • Madera • Mariposa • Modoc • Siskiyou • Trinity

JOIN THE MOVEMENT in your community and be a part of the 2009 CSI team. For more information please contact Kim Rivers at 415-230-6678 ext. 2012.

EXERCISE: FINDING THE RIGHT CLASS IN YOUR COMMUNITYThe word is out—exercise is good for every one of us, but exercise can be a daunting word for many people living with MS. With fatigue, weakness, and lack of coordination being facts of everyday life for many, exercise can seem nearly impossible. However, with modifications, people at all levels can enjoy the benefits of exercise.

Exercise can greatly increase the quality of life for people living with MS. Studies show that increased muscle strength helps build a better foundation if an attack or exacerbation occurs. Exercise can also help decrease fatigue and depression, increase circulation and flexibility, and address balance issues.

CONTINUED ON PAGE 18

LOOKING FOR A WAY TO JOIN THE MOVEMENT?BECOME A COMMUNITY SERVICE INVESTIGATOR

CREATE YOUR OWN EVENT

PRO

GRM

AS

From yoga, to aquatics to Pilates, to walking or hiking, there is something out there for everyone. Our chapter works hard to partner with facilities, organizations, and instructors in your communities to provide safe and effective classes for people living with MS. We now offer a regularly updated list of classes in the Programs & Services section of www.msconnection.org, with new classes added monthly. If you do not have access to the internet please call the Northern California Chapter at 1-800-344-4867, option 2 for more information or to request a copy of the current list of classes.

We encourage you to explore what is offered in your communities. Many gyms and studios


STUDIES HAVE ALSO SHOWNExercise has positive effects for people with MS who have

• fatigue (yes, MS fatigue) • cognitive problems • depression • weight control issues • poor balance • muscle weakness

THINGS TO CONSIDER WHEN LOOKING FOR AN EXERCISE CLASS:• Is the room or water temperature cool

enough?

• If the class is indoors, can you sit near an open window or door?

• If the class requires the participants to sit on the floor, are there chairs in the room that can be used to modify the floor positions?

• Can a partner or care provider attend the class to assist you with positions?

• Does the facility offer drop-in fees, senior discounts, or financial assistance?

• And, of course, have you spoken to your physician before embarking on any new exercise program?

offer sliding scales and financial assistance for membership fees. If you find a class that looks suitable for you, ask to speak with the instructor to let them know you may need modifications for the class, such as a cooler room temperature or a chair. Most instructors are very accommodating and are interested in learning more about how they can assist their students.

If you are currently taking a class that is not on the chapter’s list of Wellness and Recreation Programs or if you would like help in finding a class that meets your needs, please contact Sarah Hester at [email protected] or 1-800-344-4867, opt 2, ext. 2019.

BEAT THE HEATThe dog days of the summer are coming soon and the National MS Society, Northern California Chapter has a program to help with the purchase of cooling equipment to deal with the climbing mercury on those hot summer days.

Many people with MS are heat sensitive and experience a temporary worsening of their symptoms when the weather is very hot or humid. Increased fatigue, weakness, and blurred vision are just a few of the symptoms that may occur when the body’s interior temperature rises. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyeliated nerve to conduct electrical impulses.

It is important to remember that heat generally produces only temporary worsening of symptoms and does not cause more disease activity (demyelination or damage to the nerves themselves). The symptoms are generally rapidly reversed when the source of increased temperature is removed. Don’t be discouraged by the heat of the summer months. Discover the strategies and products that will work best for you, because YOU CAN beat the heat!

As summer approaches and temperatures rise, the Northern California Chapter will offer cooling solutions that can help you beat the heat. Cooling products such as vests, neck wraps, and bandanas can be helpful tools to help lower your body temperature. If you have questions or need assistance purchasing cooling products, please call 1-800-344-4867or [email protected].

LIVE LIFE TO THE FULLESTThe right introduction can open all sorts of doors—to new friends, a job, or a new way of thinking about problems.

Livinglifetothefull.com offers a free and easily accessible online course on life skills that can help people change negative patterns of thinking.

When to get professional helpThe online course is no substitute for one-on-one time with a professional therapist. But it can help people who have been hesitant about getting help—whether because of time, money, or simply not knowing where to start. It’s also a good introduction to cognitive behavior therapy, a form of therapy that focuses on helping people change how they think about their problems.

A spectrum of life skills“MS is an unpredictable disease, and that unpredictability can cause a world of anxious feelings,” said Rosalind Kalb, PhD, vice president of the Society’s Professional Resource Center. “Living Life to the Full won’t make that go away. However, it helps you identify any self-defeating thought patterns that aren’t getting you anywhere,” said Kalb.

Module topics range from practical problem solving to building confidence. Kalb particularly likes the one on sleeping. “Sleep problems are very common in MS,” she said. “This was a very good introduction to learning how to start helping yourself by using better sleep habits.”

PROG

RAM

S


COMMON STRATEGIES TO MINIMIZE THE EFFECTS OF HEAT• Drink cool water or enjoy icy treats such as

popsicles or “slurpees”• Use oscillating fans or hand held spray

bottles, especially when exercising• Stay in an air-conditioned environment

during periods of ext.reme heat and humidity (utility companies often offer a medical discount program for additional air-conditioner use with a document from your physician)

• Use cooling products during exercise or outdoor activity

• Exercise in a cool pool (80-84 degrees)

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

San Francisco, CAPermit #160

Northern California Chapter

1700 Owens Street, Suite 190San Francisco, CA 94158

GOING GREENWhether you are replacing light bulbs, eating organic, or driving a hybrid, many of us are making changes in our lives, at home and at work to become more environmentally friendly. You’ll notice our Chapter is also taking steps to become greener, more efficient, and to save money on printing, postage and mailing costs. We’ll begin by sending out our quarterly MS Connection newsletter electronically twice a year. Our summer is issue will be in electronic format.

In order to receive the electronic version, we’ll need your email. To sign up, send an email to [email protected] with the subject line “MS Connection Email Signup”. If you don’t have email, please call us at 1-800-344-4867 and let us know you would like a printed copy mailed to you. Even small steps, like these, can help our planet and allow us to be fiscally responsible, especially during tough economic times.

MS Connection Spring 2009

Documents

Transcript of MS Connection Spring 2009