Exceptional Parent Magazine, a publication for families and professionals in the special needs community, recently posted on their website a piece about the 2009 FightSMA Annual Conference that was held in April this year.

The 2009 FightSMA Annual Conference in Review
Sep 24, 2009

During the 2009 FightSMA Annual Conference the energy was actually palpable! Excitement, camaraderie and a renewed sense of determination pulsed through each of us. The large conference room at the L’Enfant Plaza Hotel in Washington, DC hosted a collection of amazingly dedicated people, sharing the same goal and focus: eradicating Spinal Muscular Atrophy (SMA), the number-one genetic killer of children under the age of two.

Advocates from Utah to New Jersey, from Georgia to New Mexico, gather together each year to join forces, share information, and celebrate their important mission. Researchers from across the country and often the world come together year after year to share new discoveries and developments, some even unpublished, with these eager families and friends whose lives have been affected by Spinal Muscular Atrophy. And, every year we march as one to Capitol Hill, sharing with our nation’s leaders the importance of this little-known, but wicked disease.

The 2009 FightSMA Conference was monumental: the SMA community had a bill in Congress for the first time in history, and they had a specific request for each Senator and Congressman, which was to cosponsor this legislation. The bill, the SMA Treatment Acceleration Act (HR 2149, S 1158), is currently in its second Congress and all of our community has been working tirelessly on a grassroots level to get this legislation passed.

To read the full article, click here. Registration required.

FightSMA is proud to announce it has added three members to its board of directors: Dan Hayden, Alex Kostyuchenko, and Bill Strong.

Dan Hayden, of Holliston, MA, is a senior management executive with 37 years experience in the pharmaceutical and biotechnology industries. Since 1999, Hayden has served as senior vice president with Genzyme Corp. and as general manager of the pharmaceuticals business group.

Alex Kostyuchenko is president and CEO of Zurich Benefit Finance in New York City, which is owned by Zurich Financial Services, an insurance-based financial services provider based in Zurich, Switzerland. He and his wife, Rebecca, have a five year-old-daughter who has been diagnosed with spinal muscular atrophy (SMA).

Bill Strong, CPA, of Santa Barbara, CA, is director of corporate development for Santa Barbara-based QFour Digital, Inc. and co-founder of the Gwendolyn Strong Foundation, a nonprofit that raises awareness and funding for SMA research. He and his wife recently created an online petition supporting SMA funding at the federal level which has attracted more than 73,500 signatures.

Extended bios are available below.

FightSMA (www.fightsma.org) was founded in 1991 to accelerate research for a treatment or cure for spinal muscular atrophy (SMA), the leading genetic cause of infant death. The group has 19 chapters in the United States and Canada and has funded SMA research projects at 43 universities and research organizations in the United States, Canada, the United Kingdom, France, and Italy.

Extended bios

Dan Hayden is a senior management executive with thirty seven years experience in the Pharmaceutical and Biotechnology industries. Since 1999, Dan has served as Senior Vice President in the Genzyme Corporation and General Manager of the Pharmaceuticals business unit, an organization of 125 employees headquartered in Cambridge, MA with its operations group located in Liestal, Switzerland. Dan also Chairman and Managing Director of Genzyme Pharmaceuticals AG, a Swiss legal entity comprised of five external and & internal board members. Dan is fully accountable for the business’s P&L performance. His span of control includes manufacturing operations; R&D; sales, marketing & customer service; business & technology development and finance. The Pharmaceuticals business is comprised of two U.S. marketed products (Welchol sold by Daicchi Sankyo and Leuprolide sold by Par Pharmaceutical); a drug delivery technology platform focused on transport of pharmaceutical drugs across the blood brain barrier and a 2nd technology that enhances circulation time of drugs in the blood (both are marketed to other Pharmaceutical / Biotech companies); and, a core specialty pharma-chemicals custom manufacturing business focused in the Lipid & Peptide API / Critical Intermediates markets. Dan and his wife Diane of 38 years have two daughters Melissa and Jennifer and three grandsons. Dan and Diane make their home in Holliston, Massachusetts.

Alex Kostyuchenko resides in Brooklyn, New York and is father to Jacqueline, 5 years old (SMA Type III) and husband to Rebecca. Alex is the President and CEO of Zurich Benefit Finance LLC in New York and is responsible for developing and managing Business Owned Life Insurance products. His primary responsibility is to manage key relationship with leading banks and insurance companies with focus on asset management, risk management and structured products. Zurich Benefit Finance LLC is owned by Zurich Financial Services an insurance – based financial services provider with headquarters in Zurich, Switzerland. Zurich Financial Services is the second largest commercial insurer in the United States. Before joining Zurich in October 2000, Alex was with KBC Bank, a Belgian universal multi-channel bank, focusing on private clients and small and medium-sized enterprises. Alex is a graduate of New York University, Leonard Stern Business School, with a degree in Finance and International Business.

Bill Strong resides in Santa Barbara, California and is father to Gwendolyn, 23 months (SMA Type I) and husband to Victoria. Bill has over 10 years of experience working with technology companies in various roles. He currently serves as Director of Corporate Development for QFour Digital, Inc., a private equity backed investment vehicle focused on acquiring and integrating forward thinking online marketing solutions providers. Prior to joining QFour Digital in 2007, Bill was General Manager of Vendare Media Group’s domain name investment and monetization group where he built the company into one of the largest domain name holders in the world. Mr. Strong is also the co-founder of the Gwendolyn Strong Foundation, a nonprofit organization that seeks to raise awareness about and fund research for SMA and support those impacted by SMA and other life-altering diseases. Bill is a Certified Public Accountant (CPA) and holds a Bachelors of Science in Accounting from the University of Southern California.

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A Fighter Mom is someone who has been touched by tragedy, and gains the will to fight to help ensure no one else has to deal with the same pain.  In this episode of Fighting Back Podcast, we meet someone who fits that description to a “T”.

Kyra Oliver’s four-month-old son, Hayes, died in 2002.  The cause of death was given as Sudden Infant Death Syndrome, or SIDS.  Within days of his death, as Kyra was still fighting through the anguish, she founded the Hayes Foundation to raise awareness of SIDS.  In 2006, she launched a campaign to educate mothers and caregivers that the safest way for infants to sleep is on their backs.  The campaign began in Kyra’s home state of Virginia and is now spreading to other states.

Kyra continues her fight, and is now planning a fundraiser in her home city that combines her desire to educate about how to avoid SIDS and her love of competitive running.  The Capital 10-Miler is being held on Saturday, October 3.  For more information, visit http://www.rrrc.org.

To listen to our interview with Kyra, can use the Flash mp3 player above.  You can also load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

Sarah Kennedy had just given birth to her second daughter last December when her 16 month old daughter, Brielle, was diagnosed with spinal muscular atrophy (SMA) type II. Five days after hearing this devastating news, her husband Eric was deployed to Afghanistan with the Army. While they were apart, Eric and Sarah were forced into action to determine how best to care for Brielle and also to deal with the possibility that the new baby, Brooke, may also be affected by the disease. While Eric was deployed, Sarah tackled the heavy work of contacting doctors and therapists and creating a plan for Brielle’s treatment and on top of all that, decided to have Brooke tested. When Brooke also tested positive for SMA type II, she was enrolled in the “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” (or “STOP SMA”) study being conducted by Dr. Kathryn Swoboda at the University of Utah, with funding from FightSMA.

Brielle with Chad Knaus

The extended Kennedy Family became involved with the larger SMA community, participating in fundraisers and contacting their Congressional Representatives about the SMA Treatment Acceleration Act. Sarah’s sister in North Carolina, Christen, introduced her co-workers at Hendrick Motorsports to SMA. After meeting Brielle for the first time at a race in Michigan, (with Christen’s help), Chad Knaus, the crew chief for three-time NASCAR Sprint Cup Champion driver Jimmie Johnson, became interested in this little known disease and asked what he could do to help raise awareness.

Chad started by adding informational links about the disease to his personal website, but recently he has gone a step further. Chad will be sponsoring a hole at the upcoming Jimmie Johnson Foundation Annual Golf Tournament and has chosen to include the FightSMA logo on the sign posted at the sponsored hole. We thank Chad Knaus and the Jimmie Johnson Foundation for including FightSMA and for this wonderful opportunity to raise awareness of SMA.

ATTENTION: SMA FAMILIES AND FRIENDS

WE NEED YOU!

Dear Friends and Family of the SMA community,

We hope that your fall is off to a wonderful start so far.

As you know, advocacy efforts are well under way for the SMA Treatment Acceleration Act in the 111th Congress. I know many of you have been hard at work making phone calls, sending emails and letters and recruiting family and friends to support this legislation. Keep up the good work!

As we learned in the last Congress, getting cosponsors for the bill is a process of touch, touch, and touch again. If your Member hasn’t yet signed on, don’t be discouraged. Just keep on writing, calling, faxing, and making visits to their district offices whenever you get a chance.

We know it’s a lot of hard work. We know it can be frustrating. You’re all doing such a fantastic job, and we salute you.

We are so proud to be part of this incredible community of advocates and FIGHTERS!

Here are some things you can be doing to ramp up your advocacy efforts and get those Members signed onto the bill!

1. Check the THOMAS website on Library of Congress (http://thomas.loc.gov) for updated lists of cosponsors (it’s updated every day). Just type in “SMA Treatment Acceleration Act” in the search box, and click “COSPONSORS” on the next page for a full list of cosponsors.
2. Go to www.PetitionToCureSMA.com and sign it! Email your friends and family the link and get them to sign it too!
3. Click here to “Tweet for a Cure” on Twitter
4. Keep emailing, calling, and sending letters to your Members. If you need help, call or email Caroline Gibson, Public Affairs Coordinator (carolinegibson@fightsma.com, 804-515-0080)
5. If you know your Member will be at home for a few days for an event or fundraiser, try and set up a meeting in his or her district offices.
6. If you’re ever in Washington, DC and have time, try and set up meetings with your Member in their Capitol Hill offices
7. If you have a blog, write about your experience lobbying for the bill and share it with your friends, family, and coworkers!
8. Most importantly, STAY POSITIVE and KEEP AT IT! All your hard work WILL pay off!!

Thank you all for everything you’re doing to fight Spinal Muscular Atrophy.

Warmly,
FightSMA

August was an exciting month for the SMA community. Over recess, many Members visited with constituents in their District offices. Many families met with their Members to discuss the SMA Treatment Acceleration Act (HR 2159, S 1158), and many were promised cosponsorship of the bill. SMA families continued to exhibit their hard work, dedication, and incredible advocacy on behalf of this legislation.

In early September 2009, Congressmen and Senators from across the country returned to Washington, DC after the month long August recess, and FightSMA was eager to return to Washington to advocate for the SMA Treatment Acceleration Act. On September 16th, Martha Slay, President, and Caroline Gibson, Public Affairs Coordinator, returned to Capitol Hill to meet with legislative aides to discuss this paramount and history changing legislation.

Slay and Gibson visited over 40 Congressional offices, dropping off information and speaking with health staffers to discuss the new bill and its positive changes, and to request cosponsorship in the 111th Congress. FightSMA is hopeful for an influx of cosponsorship over the next few weeks as a result.

FightSMA plans to return to Washington soon for follow-up visits.

In the meantime, it is imperative for you, families and friends of the SMA community, to continue your grassroots advocacy efforts to your Members of Congress. It is so important for each Member to hear from you, their constituents, and for them to know that this bill is important to you. For help contacting your Members of Congress, please email or call Caroline Gibson, Public Affairs Coordinator (carolinegibson@fightsma.com, 804-515-0080).

Major Mark Harris, his wife, and son Jonathan (age 4, SMA type III) pose with Senator Richard Burr (R-NC) in his district offices over August recess. Senator Burr, a member of the HELP committee in the Senate, agreed to cosponsor the SMA Treatment Acceleration Act (S 1158).

Over the weekend, the Rankin Ledger ran an article about the Horton Family of Flowood, Mississippi. Jeff and Dee Horton took up the fight against Spinal Muscular Atrophy after their daughter Evie was diagnosed with the disease and as you may know from previous blog posts, they have been leading efforts to gain support from Mississippi’s Senators and Representatives for the SMA Treatment Acceleration Act, visiting Capitol Hill during the 2009 FightSMA Annual Conference in Washington, DC.

In the article, Jeff describes what lead them to become concerned. He said, “At one year, Evie was able to stand, cruise furniture and grab onto fingers of adults….We just weren’t seeing progress in Evie six months later. She wasn’t walking without assistance and seemed scared to walk on her own. The real alarm was when we saw her on the floor, lifting her legs with her hands to move them.” Despite her struggles, Evie is a beautiful, happy little girl who “talks up a storm and loves to sing.”

Click here to read the full article.

From the National Institutes of Health press release:

NINDS Names Dr. Petra Kaufmann Director of the Office of Clinical Research

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health, has named Petra Kaufmann, M.D., M.Sc., as director of its Office of Clinical Research.

Dr. Kaufmann is among the foremost experts in the design and management of clinical trials for neuromuscular disorders, including spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS), and mitochondrial diseases. In her new role, Dr. Kaufmann will lead the Institute’s efforts to increase the effectiveness of clinical studies by addressing issues such as optimal trial design, ethical safe conduct of trials, and challenges in patient enrollment.

“Dr. Kaufmann has experience in all phases of clinical research, from conducting laboratory investigation and studies on disease mechanism to serving in key leadership positions on several major multicenter trials,” said Story C. Landis, Ph.D., director of NINDS. “Dr. Kaufman’s outstanding skills and expertise will allow us to make the most of the scientific opportunities ahead and to have a significant impact on clinical neuroscience.”

Dr. Kaufmann said, “I look forward to supporting excellence in clinical research at NINDS so that the advances in neuroscience can be translated into better treatments for patients.”

To read the full press release, click here.

Bill Strong, co-founder of the Gwendolyn Strong Foundation and creator of the Petition to Cure SMA, sent out the following note this week:

This week we hit a very significant milestone —> 70,000 petition signatures! This is an amazing accomplishment and together we have already made a difference in Congress drumming up much needed support for the SMA Treatment Acceleration Act of 2009, but we need more signatures to keep up the pressure and move this legislation forward this session.

Simple ways you can help:

(1) Facebook status —> Update your Facebook status to tell your friends to go to http://PetitionToCureSMA.com and take 30 seconds to sign on in support of legislation currently in Congress, the SMA Treatment Acceleration Act of 2009, that will help end the #1 genetic killer of infants, SMA.

(2) Tweet about it —> Use your Twitter account to get the message out about PetitionToCureSMA.com.

(3) Pass around our public service announcement videos —> Check out the two petition videos that we’ve put together and pass them around to your friends. Our most recent video, “Join The Fight!” http://www.youtube.com/watch?v=DncMkpqn_xo, has received nearly 5,000 views and our first video, PetitionToCureSMA.com http://www.youtube.com/watch?v=U_pL0kMvlcg, has received over 11,000 views.

Thanks so much for your continued support. Together we will unite to continue to make a difference in Congress to see this important legislation passed this session!

All the best,

Bill, Victoria, and Gwendolyn Strong
PetitionToCureSMA.com