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Our mission: To lead the fight to cure and treat

ALS through global cutting-edge research, and to

empower people with Lou Gehrig’s disease and

their families to live fuller lives by providing them

with compassionate care and support.

Our Vision: Creating a world without ALS

Staff

Stacey Orsted Executive Director stacey@alsa-michigan.org Amie Kenyon, RN Patient Services Coordinator akenyon@alsa-michigan.org Kristen Munyan, RN, MSN-Ed Patient Services Manager kristen@alsa-michigan.org Robbie Banfill Special Events Coordinator rbanfill@alsa-michigan.org Joseph Kulwicki Development Coordinator jkulwicki@alsa-michigan.org Marie Tominna Volunteer Coordinator mtominna@alsa-michigan.org Cathryn Rybicki Accountant crybicki@alsa-michigan.org Julia Bauer “Michigan Matters” editor news@alsa-michigan.org The ALS Association Michigan Chapter Website: www.alsa-michigan.org Email: fightals@alsa-michigan.org West Michigan Office 678 Front St., Suite 401 Grand Rapids, MI 49504 Phone: 616-459-1900 Toll-free: 800-387-7121 Fax: 616-459-4522 Skype: alsawestmichigan East Michigan Office 675 E. Big Beaver Rd., Suite 207 Troy, MI 48083 Phone: 248-680-6540 Toll-free: 866-927-CURE Fax: 248-680-6541 Skype: alsamichiganeast

Board of Directors John Crosby President Matt Wey* Past President Deborah Gelinas, M.D. Chip Hurley Pat Moran Todd Noeske Public Policy Chair Jeffrey Swain Craig VanSplunter Susan Woolner Advisory Board Member: Daniel Newman, M.D. Honorary Board Members: Pamela Bouma Lew Chamberlain Ed Dobson, Ed.D. Randy Ernst Eva Feldman, M.D., Ph.D. Mike Melcher, former board presi-dent *Voting member, National ALSA Board of Representatives _____________________________________________________________

In My View: By Stacey Orsted, Executive Director Welcome to the first edition of Michigan Matters, our chapter’s new quar-terly magazine. Our goal: to provide you with comprehensive information on local happenings, from patient services and fundraising/awareness events to the advances in our Public Policy and Research efforts on a Na-tional and Global basis. The Michigan Chapter has been serving the area since 1988, as your local organization with national support. Our Michigan chapter had plenty to be proud in 2010: Michigan Chapter expanded the quantity, quality and territory of pa-

tient and family services across the state. We partnered with and provided funding to our three ALS Clinics in-

cluding Henry Ford, University of Michigan and Mary Free Bed Reha-bilitation Hospital.

Strong family and corporate support helped chapter excel in all areas. Here’s a sample of our progress:

Thanks to phenomenal efforts by our community partners and dedicated families, the Michigan Chapter won national recognition in many catego-ries at the recent national Leadership Conference, receiving the prestig-ious “Hall of Fame” award for performance in 2010. This included having the No. 1 Corporate Walk team in the country, Quicken Loans. Quicken Loans CEO Bill Emerson and his team were honored with the “Innovation Award for Outstanding Service and Fundraising Initiatives” by our National Leadership. Looking forward to 2011, we are eager to keep up our momentum in the fight against ALS. With a passionate and dedicated board of directors, staff and large volunteer network, we are sure to make a difference. Our chapter is embracing new technology to better serve our patients and their families: beyond our website and e-mails, you can find us on Face-book, Twitter, Skype and LinkedIn. Our five Walks to Defeat ALS across Michigan, two Iron Horse rides to defeat ALS, and our annual CaddyAm golf/auction all increase awareness and raise money for the cause —not to mention all the third-party events done by our Volunteers. We have already kicked off 2011 with two Research Updates & Celebra-tions of Excellence and are busy preparing for a powerful trip to Washing-ton D.C. for our National Advocacy Day. Patients and their families always come first in everything we do! Your input is important. Please feel free to direct questions, suggestions or comments to me at any time. We would love to hear from you!! A special thank you to Julia Bauer for helping us put together our first Chapter Magazine! Julia was diagnosed with ALS in September of 2010 – the fourth person in her family with this diagnosis. Julia retired as a staff writer from the Grand Rapids Press and is devoting her time to help raise awareness. Thanks, Julia! “Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead

1. Virtual support groups and home visits using Skype; 2. A new Volunteer Connection program mobilizing people

across the state to help those families in need; 3. Increased family and corporate participation.

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When people campaign in the fight against ALS in Washington, D.C. this May, they’ll face fresh faces and feverish frugali-ty among the halls of Congress. That reality makes the work even more crucial for those gearing up for “Roadmap to a Cure” May 8-10.

Hundreds of advocates nationwide are expected to make the trip to the nation’s capitol for the three-day 2011 National ALS Advocacy Day and Public Policy Conference. In brief, the Advocacy Conference expects to inform leaders, ramp up research funding, and improve patient services around the world. No small task, but no less worthy for the challenge.

While the political goals are both lofty and crucial, another impact is the camaraderie and fellowship among families with ALS who find they are not alone in the fight.

First, a look at the political goals for 2011:

Increase funding for the national ALS Registry, started just last fall;

Double funding for the ALS Research Program at the Department of Defense, with a sole mission to develop a treatment for ALS.

And for the participants, from those with ALS, to their caregivers, to organizations that support them, the gathering pro-vides a very powerful and active way to fight back against ALS.

On the road to a cure (don’t delay—low rates end April 8)

Registration fees (waived for people with ALS and one caregiver) Before April 8 (for all others): $175 for ALS Association affiliates $25 for children age 3-16 $350 for non-affiliated participants After April 8, all fees double. Headquarters/Hotel: JW Marriott 1331 Pennsylvania Ave. NW Washington, D.C. 20004 Ph: 202-393-2000 Rates: 1-2 people, $226 + tax 3 people: $256 + tax 4 people (max allowed) $289 + tax (rates rise after 4/8/11)

Questions? Need ADA accessible hotel room? Contact: Stacey Orsted 616-459-1900

advocacy@alsa-michigan.org

Our 2011 Advocacy Day road map:

Sunday, May 8 3:30-4:30 pm Opening Session 4:45-5:30 pm Preparation for the Hill 6:30-8:15 pm Mother's Day Family Barbeque 8:30-9:00 pm Candlelight Vigil at Freedom Plaza 9:30-11:00 pm Ice Cream Social Monday May 9, 2011 8:15-11:00 am Government ALS Research 11:15-12:45 pm Breakout Session I: Congressional Meetings 101 (for first-timers) Advocacy for Children and Families Caring for our Caregivers: Advances in Respite Care 2:30-3:45 pm Breakout Session II: fALS (familial ALS) Social Security & Medicare for People with ALS Stem Cells: Exploring the Possibilities for ALS 4:00-5:30 pm State of ALS Research Tuesday May 10, 2011 7:30-9:00 am Celebration breakfast, awards 9:00-5:00 pm Meetings With Members of Congress

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You have power in numbers! Here’s a few stats on how your advocacy helps:

Joseph RichardsJoseph RichardsJoseph Richards

Sam SiciliaSam SiciliaSam Sicilia

Debra SimpsonDebra SimpsonDebra Simpson

Robert SudaRobert SudaRobert Suda

Evelyn VanemstEvelyn VanemstEvelyn Vanemst

Janet WillisJanet WillisJanet Willis

Harold WinterHarold WinterHarold Winter

Going to D.C.?

Battling a familial form of ALS?

Researchers with the Na-tional Institute of Neuro-logical Disorders and Stroke will collect blood samples from both fALS and PALS on Monday, May 9, at 8 a.m., 10 a.m., and noon.

If you want to partici-pate, including filling out a questionnaire, con-tact Patient Services, alsainfo@alsa-national.org, or call 800-782-4747

How many diseases, besides ALS, that have won a waiver of Medicare’s 24-month waiting period. Congress agreed to the waiver in 2001, enabling much quicker access to benefits for PALS.

Department of Defense funding, in millions, over three years to for ALS Research Program. Its specific goal: find a treatment for ALS.

Value, in millions, of health and disability benefits for veterans with ALS in one year, through regulations established by the Department of Veteran Affairs, with help from the ALS Association.

Percentage increase in yearly government funding for ALS research since 1998, when the ALSA set up its Advocacy Department in Washington, D.C.

Total government funding, in millions, for ALS research since 1998.

The year when the Social Security Administration established a “presumptive disability” status for an ALS diagnosis, the result of an ALS Association campaign. The regulation speeds disability cov-erage for people with ALS.

National ALS registry begins, where people with ALS sign on and help create the single largest ALS research program in history.

Note from the ALS Association: “These accomplishments could not have been achieved without the efforts of people with ALS and their families to speak out, participate in our advocacy ef-forts, and tell the ALS story to Members of Congress.”

We remember:We remember:We remember:

Judy BenfieldJudy BenfieldJudy Benfield

Ronald BoyerRonald BoyerRonald Boyer

Virginia ClineVirginia ClineVirginia Cline

Randy CookRandy CookRandy Cook

Reba DialakReba DialakReba Dialak

Elizabeth EllisElizabeth EllisElizabeth Ellis

Thomas FickThomas FickThomas Fick

Iolanda GiovannoneIolanda GiovannoneIolanda Giovannone

Marie HartwellMarie HartwellMarie Hartwell

0

17.5

130

500

585

2003

2010

Jeanne HarveyJeanne HarveyJeanne Harvey

Robert HayesRobert HayesRobert Hayes

Bobby HolleyBobby HolleyBobby Holley

Louis JamnickLouis JamnickLouis Jamnick

Jay KortesJay KortesJay Kortes

Robert LockwoodRobert LockwoodRobert Lockwood

Rosann NovakRosann NovakRosann Novak

Irene PacholkaIrene PacholkaIrene Pacholka

Sunil PilgonkarSunil PilgonkarSunil Pilgonkar

We send heartfelt condolences to all the families and friends of those who’ve passed away in recent months. If we’ve overlooked anyone beginning

Dec. 1, 2010, please let us know at fightals@alsa-michigan.

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Golfers continue tradition May 23 Bruce Edwards, Tom Watson’s caddy for 30 years, lost his fight against ALS in 2004. Now, tour players and caddies help honor Bruce’s memory by participating in the day’s events. This year’s tee-off is set for a shotgun start at 1 p.m. Monday, May 23, at Thousand Oaks Golf Course, 4100 Thousand Oaks Drive, Grand Rapids. Teams are being organized now, with an upper limit of 30, so don’t put off putting this on your calendar! Since the CaddyAm first teed off, golfers have raised nearly $500,000 to help in the fight against ALS!

Here’s the scorecard:

Registration: $1,000 per foursome, $250 per person

Dinner/Auction only: $125 per couple, $75 per person

11 a.m. — Lunch Buffet/Registration begins

1 p.m. — Shotgun start begins

5:45 p.m. — Cocktail hour begins

Dinner and auction hosted by WLAV’s Tony Gates.

For more info? E-mail fightals@alsamichigan.org or check our Web site:

www.caddyam.org AND find us at:

Facebook/CaddyAm

Without stellar sponsors, our golf crusade would never get off the ground. Thanks to these who have already signed on to help:

There’s still time to sponsor CaddyAm: e-mail Stacey@alsa-michigan.org.

Michigan native and pro golfer Dan “Pohlcat” Pohl will be back for CaddyAm this year. In 2010, he joined local judge and golfer Sara Smolenski to raise money in the battle against ALS.

Team EQI was joined by Mike “Fluff” Cowen, PGA Tour Caddy, to make it a memorable day.

Tim Doty former sports directory and current co-host of The One Seven will be joining us again this year.

Another highlight for 2011? A special appearance at CaddyAm by our own Ed Dobson, pastor emeritus of Calvary Church and long-time fighter in the battle against ALS.

Last year, Team Noeske made a big showing, in numbers AND effort, just one of the family groups carrying the

flag to defeat ALS.

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Registration starts at 7 a.m. at both locations. Riders will head out between 8 a.m. and 11 a.m., and should aim to return to the park by 3 p.m. Registration fee: $75 *. If you raise $500+, you’ll get a Ride to Defeat ALS cycling jersey! On June 11Olson Park, Ann Arbor On June 18, Fallasburg Park, Lowell

After the ride, families and exhausted bicy-clists will gather for some thirst-quenching refreshment at the Gears & Beers celebration and cook-out.

Get ready test your mettle and pedal with the pack this June. Choose the distance that fits your fitness factor:

Iron Pony — 25 mile scenic route for less-experienced bicyclists or easy-going experts. Open to all levels of bike-riders.

Metric Century — AKA a 62-mile bike hike along residential streets and paved trails, including a drive-by of some of Michigan’s grand homes.

Century — Aptly named, this 100-mile ride begins with a bang (actually, a shotgun start), and follows back roads through the environs around either Ann Arbor or Lowell.

Riders get some sweet perks. Here’s a sampling:

Breakfast AND lunch

Event T-shirt

Rest stops/first aid/bike repair

Massages/entertainment/demos at finish line

Awards and prizes for fundraising

Local group rides, and route maps

Live music and tickets to Gears & Beers after party

Team Toyota

We’d be off-track if we didn’t thank the sponsors who make the ride AND the after-party possible:

When bicyclists head off for jaunts around Ann Arbor and Lowell this June, they’ll ride in the glow of one of the most legendary PALS in history — Lou Gehrig, renowned as the “Iron Horse” of baseball. Teams are organizing now for the rides, and the money raised supports local ALS pa-tient services in Michigan, and research to find a cure.

Check out developments online a www.rideals.org or facebook/gearsandbeers

View more event photos on Shutter-fly. gearsbeers2010.shutterfly.com

*Early bird discount until 4-1-11. Use the code earlybird at registration.

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Build your team today, and get ready for Walk ’11!

1

2 Select MICHIGAN from pull-down menu

3 Choose a Walk location:

Michigan Virtual Walk When you want to support but there are

no walks in your area Detroit Walk

September 17, 2011

Jackson Walk September 11, 2011

Grand Rapids Walk September 18, 2011

Portage Walk September 24, 2011

Traverse City Walk October 1, 2011

4 Select REGISTER

5 Choose START A TEAM or JOIN A TEAM.

Traverse City walkers, 2010

6 Go through the entire registration process. Make sure you click “COMPLETE REGISTRATION.”

Go to Web site: www.walktodefeatals.org

From blue skies in

Grand Rapids

To a sunny day in Detroit,

From a fun romp in foggy Jackson

To a damp dash

in Portage,

We could never go the distance without the generous help statewide from these two sponsors!

Thanks!

Team registrations are already open for September’s annual Walk to De-feat ALS, planned for five locations and one virtual trek in Michigan. Get going now to reach the most peo-ple and make your mileage count!

Michigan Walk to Defeat ALS

The Walk to Defeat ALS is a day of hope, a day of remembrance, and a day to make a difference. Join the 1000’s of others who will come out to Walk as we get one step closer to finding a cure. The number one question PALS get is. “How can I help?” or “What can I do?”. Now you have an answer! Ask your friends and family to get involved with the 2011 Walk to Defeat ALS. This is a great way for them to share their support and help them learn more about the disease. In 2010, The ALS Association- Michigan Chapter raised almost $450,000 for local services, ALS Clinic support and research to find a cure. Please join Quicken Loans and Fathead.com in their commitment to the fight against ALS as they return for the 3rd year in a row as our Statewide Presenting Sponsor for the Walk to Defeat ALS. Their passion has helped raise tremendous awareness and funds for our families here in Michigan as well as research to find a cure. Help BE the difference in 2011.

Michiganwalktodefeatals.shutterfly.com

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March begins new monthly research series

An expansion of the Research Roundtable begins this month, in an effort by the ALS Association to reach a broader audience of people who want more frequent updates. Directed by Dr. Lucie Bruijn, chief scientist of the ALSA, the first Re-search Update focused on exome sequencing. That technology works to dramati-cally increase the speed to identify gene mutations underlying familial ALS.

$1 million to better track ALS

The ALS non-profit Prize4Life has awarded a $1 million ALS Bi-omarker prize to neurologist Seward Rutkove. He has developed an accurate technology, called electrical impedence myography, or EIM, that sends a tiny, painless electrical current through mus-

cle tissue. The EIM can measure the size and speed of the current, when it flows through healthy or diseased tissue. ALSA Chief Scientist Lucie Bruijn said the ability to diagnose bi-omarkers is “not only for better diagnosis, but to facilitate shorter clinical trials for ALS.” That in turn, will motivate drug companies to move more quickly in developing treatments for ALS.

Connecting the Dots………...

Researchers win ALSA grants The TREAT (that’s Translational Research Advancing Therapies) ALS Portfolio has awarded four research projects. They include:

4th FALS gene mutation found Mutations in the valosin-containing protein (VCP) gene have been identi-fied as the cause of disease in a small number of patients with FALS. The research by Dr. Michael Benatar will investigate how often mutations of the VCP gene shows up in patients with a different degenerative disease with a longer name than ALS: IBMPFD, or Inclusion Body Myopathy with

Paget’s disease and Fronto-temporal Dementia. Closer inspection of families

with IBMPFD suggests that affected family members may have ALS. Dr. Benatar also wants to determine how often ALS in families is caused by the mutation of the VCP gene. Mutations in the VCP gene have been identified in five families with familial ALS.

Link between ALS and dementia PHILADELPHIA — The first molecular link between ALS and cognitive impairment, called fronto-temporal lobar degeneration, or FTLD, has been traced to proteins that clump in the brain and spinal cord, accord-ing to research by Dr. Virginia Lee at the Center for Neurodegenerative Disease Re-search in Philadelphia. The building-block proteins, TDP-43, appear as abnormal clumps in both ALS and FTLD patients, sug-

gesting the two syndromes are on a continuum of the same neurodegenerative disorder.

Lift, Spin or Stretch? BALTIMORE — Does exercise help slow the progression of ALS? Dr. Nicholas Maragakis at John Hopkins University, and Dr. Merit Cudkowicz at Massachusetts General Hospital in Boston are going to test that theory. Participants with ALS will be asked to try one of three regimens: 1. Weightlifting (resistance exercise); 2. Stationary bicycling (endurance exercise); and 3. Range of motion exercise (standard approach for ALS patients) They will use several different types of tests to determine wheth-er one type of exercise is tolerated and safer than another, and collect information about how the body responds to exercise in ALS.

Dr. Seward Rutkove

Dr. Virginia Lee

Dr. Michael Benatar

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What’s green got to do with it?

Is it fad or is it fabulous? According to the University of Southern Florida, green-algae spirulina or plain old spinach seem to help protect motor neurons. Based on experiments with ALS mice, supplements of the green stuff appeared to reduce inflammation and motor neuron death.

Their study is published in “The Open Tissue Engineering and Regenera-tive Medicine Journal.”

“Most available treatments relieve symptoms without altering the under-lying disease. However, evidence for oxida-tive stress has been associated with ALS and, in our past studies, we demonstrated potent decreases in markers of oxidative damage and inflammation in aged rats fed diets supplemented with spirulina or spin-ach,” said the study's lead author, Svitlana Garbuzova-Davis, assistant professor in the Department of Neurosurgery and Brain Re-pair at USF.

When the USF researchers tested compounds found in blueberries and spirulina for effectiveness in animal models of stroke and aging in past experiments, they noted neuroprotective effects. The current study com-pared ALS mice receiving a spirulina-supplemented diet over a 10-week period with mice that did not receive the diet supplementation. The spir-ulina-fed ALS mice showed reduced inflammatory markers and motor neuron degeneration over that period.

ALS mice get a base in Maine BAR HARBOR — Last fall, a challenge grant of $315,400 created a national ALS mouse model repository at the Jackson Laboratory in Bar Harbor, Maine. The base will help researchers get better access to mice who come with the ALS disease on board genetically.

“This repository will acquire new ALS mouse models and rapidly deploy them to the scientific community,” said Michael Hyde, Jackson’s president for advancement and external relations.

Exome sequencing helps I.D.

familial ALS genes BETHESDA, MD. — A technique less than a year old, exome sequencing, has proven its ability by showing the fourth mutation linked to familial ALS, known as VCP pro-teins.

Why is exome sequencing so powerful? Because the vast majority of mutations,

more than 85 percent, are underlying inherited forms of disease found in the roughly 1 percent of the genome that encode for proteins.

The discovery of each gene causing familial disease is an important mile-stone in ALS research, for it not only provides a fun-damental insight into the cellular pathways involved in neurodegeneration, but it also guides future molec-ular biology experiments to understand this pro-cess. Ultimately, the finding of each gene may yield a new array of drugable targets, facilitating the de-velopment of new therapeutic agents effective in slowing the progression of this fatal disease.

Data generated from this project will be made publicly available to enable other researchers to mine the data and combine it with their own exome sequence data.

ALS: One disease or a bundle? Earlier this winter, ALS scientists and advocates gathered in Orlando, Fla., for the International ALS/Motor Neuron Disease Symposium. The final speaker, neurologist Nigel Leigh from London, said the discovery of new genes implicated in ALS make the picture more complex, and sug-gests there are multiple primary causes of the disease.

“The key question facing researchers is whether we should be ‘lumpers’ or ‘splitters’ in classifying ALS,” Dr. Leigh said. “This needs to be resolved to make further progress in genetics, biomarker and drug discovery. The persistence in lumping patients in the clinical design of drug trials may be one of the main reasons for the lack of success in finding disease modifying therapies.”

But splitting ALS into sub-groups has its own problems. A major challenge for any clinical trial in ALS is enrolling enough patients to achieve “statistical power,” meaning the results, positive or negative, can be con-sidered definitive.

Researchers with Dr. Leigh found that two factors predicted most of the variability among groups: site of symptom onset (bulbar or limb) and delay from first symptom to diagnosis, with longer delay predicting longer surviv-al.

“This is not the final word on the subject,” Dr. Leigh hastened to add, but it may provide a jumping-off point for further refinement, with the goal of defining natural divisions among cases of ALS that can speed clinical trials

“The value of this type of approach is that it may allow us to design clini-cal trials to give us faster and clearer answers,” said ALS Association Chief Scientist Lucie Bruijn. “We will continue to search for the best ways to understand ALS in all its forms, and to design therapies to treat each of them. We will also be seeking ways to increase trial enrollment to make sure the results of every trial are definitive.”

Dr. Bryan Traynor

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When ALS chapters gathered at the 2011 Leader-ship Conference, the Michigan group garnered lots of kudos — and narrowly missed being crowned Chapter of the Year. Our organization did bring home the highly regarded “Hall of Fame” award for the chapter’s 2010 results. Here, sharing our highest honor, are (from left) Robbie Banfill, Stacey Orsted, and Joseph Kulwicki.

If you missed it …

The March 8 and 9 Research Updates and Award of Excellence celebration, first in Troy, then in Grand Rapids, honored the achievements by PALS and their families, mingled with news on the science front. Details of the latest research advances in ALS treatment came from neurologists on both sides of the state.

Dr. Eva Feldman spoke of stem cell therapy in Troy .

Front left ; Joe Kulwicki, Dr. Dan New-man, ALS Clinic Director at the Henry J. Hoenselaar ALS Clinic at Henry Ford Health System; Stacey Orsted, and Steph-anie Ryczko, Nurse Coordinator , in Troy Feb. 8.

At left, Stacey Orsted (center) presents community service award to Dr. Kirsten Gruis (left) ALS Clinic Director at University of Michigan, and Dr. Eva Feldman, ALS Research Director. In Grand Rapids (shown above left) the award went to the MSU MD/ALS clinic staff at Mary Free Bed. From left, Stacey Orsted, and accepting the award for the staff , Dr. Deborah Gelinas, Connie Brown-Olds, Leah Kulhanek, Melissa Hoffman, and Brad Norg. Above right an audience member asks a question during the Q&A portion of the Troy Research Update.

In Grand Rapids, Dr. Kirsten Gruis, left, and Dr. Deborah Gelinas fielded ques-tions after updates on ALS research..

ALS Clinicians, staffs lauded

PALS, families, earn the spotlight for teams Just two of the great families in the battle against ALS in M i c h i g a n w e r e t h e Schnursteins (near right) who gathered the top team for the 2010 Walk; shown are broth-ers Brian and Ray and their dad Ray, with Robbie and Stacey of ALSA-MI staff; and at far left, Terence and Zach-ary Fortney and Tina Piccione.

Best in Show Celebrated in Grand Rapids: ALS Research update presentation in Grand Rapids by Dr. Kirsten Gruis and Dr. Deborah Gelinas Top awards covering SW, West and Northern Michigan: Iron Horse: Matt Wey Top Corp. Team: MFB Walkers Rookie of the Year: Brian Schnurstein Outstanding Advocate: Todd Noeske Outstanding Third Party Event: The Fortney Family Top Family Team: Miracle Awareness Team Outstanding Chapter Partner: United Seat-ing and Mobility

Best in Show Celebrated in Troy: ALS Research update presentation in Troy by Dr. Kirsten Gruis, Dr. Dan Newman and Dr. Eva Feldman. Top awards covering SE and East and Mid- Michigan: Iron Horse: Bill Emerson Top Corp. Team: Quicken Loans Outstanding Advocate: Amanda Pardee Outstanding Third Party Event: The Barnowski Family Top Family Walk Team: Team Tison Top Ride Team: Team Hutchins Outstanding Chapter Partner: United Seating and Mobility

Also recognized for faithful and longstanding support is our 2011

Outstanding Chapter Partner

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Didja hear? New way to stay in touch

Once registered, you can reach Kristen in Troy, at 248-680-6540; screen name is alsamichiganeast. In West Michigan, call Amie at 616-459-1900, screen name alsawestmichigan.

Using Skype, a free online video-conferencing service, “virtual consultations” will be possible when travel to one of the offices gets difficult.

To download a free version of Skype, visit Skype.com and select the “Free Video Calling” icon at the bottom of the screen. You will need to choose your own screen name and password.

The equipment will help people with ALS all across the state. Thanks, Rite Aid!

Rolling out help

Casual style = great effort When ALS Awareness Month rolls around this May, employees at Grand Rapids Label are giving $5 each Friday for the perk of wear-ing jeans to work. Their denim devotion will give PALS and their families a leg up in Michigan.

If you hear about other cre-ative ways people are ob-serving the May ALS aware-ness effort, please share it with us!

When snow piles up or transporta-tion gets tough, people with ALS and their families will have a new way to reach the Patient Services Team at The ALS Association, Michi-gan Chapter.

Rite Aid is providing a $20,000 grant to help boost the gear available in Michigan ALSA’s durable medical loan closet.

A special thank you to the Dyer Ives Foundation for the technology grant that allows us to

communicate more efficiently with our patients and caregivers.

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EVENTS

MARCH 19: Hands Around the World, Third-Party Event, Roches-ter APRIL 15: “Hospice is Not a Dirty Word,” 10 a.m.-2 p.m., River-room, 678 Front Ave. NW, Grand Rapids. RSVP 616-459-9100 or akenyon@alsa-michigan.org MAY 8-10: Advocacy for ALS Funding, Washington D.C. MAY 23: Caddy Am Golf Outing and Dinner/Auction, Thousand Oaks Golf Course, Grand Rapids JUNE 11: Iron Horse Bike Ride to Defeat ALS, followed by Gears & Beers; Olson Park, Ann Arbor JUNE 18: Iron Horse Bike Ride to Defeat ALS, followed by Gears & Beers; Fallasburg Park, Lowell JULY: (date/site TBD) Rock and Rumble Motorcycle Ride to De-feat ALS SEPTEMBER: Walk to Defeat ALS Sept. 11: Jackson Sept. 17: Detroit Sept. 18: Grand Rapids Sept. 24: Portage Oct. 1: Traverse City

Finding support: Here’s a line-up of support groups this spring. Watch for new groups in Traverse City and St. Joe/Benton Harbor! Check for updates at www.alsa-michigan.org or phone 616-459-1900 (West Michigan) or 248-680-6540 (Eastern Michigan) Second Sundays: Grand Rapids: 2-4 p.m., First Evangelical Covenant Church, 1933 Trem-ont Blvd. NW; 616-453-6346

Second Wednesdays: Kalamazoo: 7-8:30 p.m., First United Methodist Church, 212 S. Park St.; 269-381-6340

Second Thursdays: Troy: 6:30-8 p.m., Big Beaver United Methodist Church, 3753 John R Rd. Statewide call-in: 2-3 p.m., Dial toll-free 877-643-6951; passcode 31723015# to join the group

Third Mondays: Bay City: Zion Evangelical Lutheran Church, 545 7th St., Freeland

Third Tuesdays: Statewide call-in: 6:30-7:30 p.m., Dial toll-free 877-643-6951; passcode 31723015# to join the group

Fourth Mondays: Ann Arbor: 6:30-8 p.m., University of Michigan Medical Center, Dept. of Neurology, First Floor Taubman Center Flint: 6:30-8 p.m., Fenton United Methodist Church, 119 S. Leroy St., Fen-ton (New Family Center Building at East Silver Lake Rd/Main Street and South Leroy)

Fourth Thursdays: Gaylord: 2:30-4:30 p.m., University Center, 80 Livingston Blvd. Wyoming: 11:30-1 p.m., Survivors Lunch, Arnie’s Restaurant, 77 54th St.; 616-532-5662