FightSMA representatives Martha Slay and Caroline Gibson traveled to Washington, D.C. earlier this week, to garner support and cosponsors for the SMA Treatment Acceleration Act (HR 2149, S 1158).

As the healthcare debate continues in Congress, we are working hard to keep our message and our mission front and center on Capitol Hill: the passage of the first-ever federal legislation dedicated to spinal muscular atrophy.

Because the Energy & Commerce committee is the committee of jurisdiction in the House, FightSMA visited Committee Members offices, sharing information on the bill with Health Staff, as well as signatures from PetitionToCureSMA.com.

Offices Visited
Rep. Mike Ross (AR)
Rep. John Barrow (GA)
Rep. Mike Doyle (PA)
Rep. Charlie Melancon (LA)
Rep. Tim Murphy (PA)
Rep. Cliff Stearns (FL)
Rep. Edward Markey (MA)
Rep. Eliot Engel (NY)
Rep. John Dingell (MI)
Rep. Zach Space (OH)
Rep. Baron Hill (IN)
Rep. Bart Stupak (MI)
Rep. Nathan Deal (GA)

In addition to House Energy & Commerce Committee Member offices, FightSMA also visited in Congressman Patrick Kennedy and Congressman Eric Cantor’s offices, our lead House sponsors, to thank them for their hard work and dedication to finding a cure for SMA.

Click here for more information on the SMA Treatment Acceleration Act.

Click here to sign the Petition To Cure SMA.

To contact your Members of Congress, please contact CarolineGibson@FightSMA.com

If you were up late last night, you might have notice a familiar phrase on a t-shirt worn by one of the musical guests on NBC’s Late Night with Jimmy Fallon. Lead singer J. Robbins is the guitarist and lead singer of Jawbox, which made its first appearance since 1997 during the show. Robbins’ was front and center, wearing a Fight SMA t-shirt! His son, Callum, has spinal muscular atrophy, and in the past few years J. has become a great voice in the SMA community.

If you missed the performance, you can watch it below!

Friends old and new gathered on November 21, 2009 at Richmond’s newest waterfront restaurant, the Boathouse at Rocketts Landing, for the 2009 FightSMA Fall Party to celebrate and help raise awareness and critical research dollars for spinal muscular atrophy.

Guests at the party enjoyed live music by local Richmond favorite, DJ Williams Projekt, while sipping cocktails and enjoying Boathouse specialty hors d’oeuvres. When they weren’t on the dance floor, guests were able to bid on a robust variety of silent auction packages provided by:

• Plus1Tickets
• By Invitation Only
• DowntownShortPump.com
• Lemaire
• Roan boutique
• Heist jewelry
• MacLaren Jewelers
• real life studios
• Hayes & Fisk: The Art of Photography
• Appliance Solutions
• Visual Arts Center of Richmond

The Boathouse at Rocketts Landing and Shockoe Bottom’s Frame Nation provided gift certificates for the raffle.

When guests at the Fall Party wanted to let their hair down, they grabbed their friends and climbed into the on-site photo booth provided by Virginia Photo Booths and More to create a memorable keepsake to take home from the party. One guest said, “the photo booth was such a cute touch and so nice that it was customized with the event info.”

FightSMA President and Co-Founder, Martha Slay, briefly addressed the crowd to thank them for their support, update them on the progress being made, and encourage them the continue their efforts. A portion of her speech can be heard in the video recap of the event.

It was a fantastic and fun evening, and most importantly, for a wonderful cause: to help fight spinal muscular atrophy. Another attendee declared, “lovely evening, gracious hosts, beautiful people, a gorgeous setting and a great cause. The perfect evening. You have done it again!”

Still photography provided by Sam Perry Photography.

Saturday, September 26, 2009 was a spectacular night in Toronto and an even greater success for FightSMA’s Canadian chapter Tori’s Buddies.

A Casino Royale theme transformed the Fermenting Room at Toronto’s Historic Distillery District. It was a great room, and the company even better. A heartfelt thank you to all of the 300 supporters who attended the 10th annual FightSMA Canada Gala. It was a “full house” ultimately “betting” that we will one day “hit the jackpot” and find a cure for Spinal Muscular Atrophy (SMA). We know that thanks to these supporters, we are raising awareness and the needed funds for the research that will get us to that goal. Because of the generous donors, we have surpassed a very impressive $175,000 so far, and we are still counting. Many thanks to our lead Sponsor CML Healthcare and our other sponsors Wilson Truck Lines, Paramount Pallet,TD Securities and PWC. We hope to see you all again next year.

The pictures are fabulous and all the fun can be viewed at www.hadaball.com. Just click on “Events,” then select “SMA Gala.”

A heartfelt “Thank You!” from Tracy, Shawn and the FightSMA Board of Directors.

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.

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.

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).

On August 27th, FightSMA Southwest/Desiree’s Buddies held the 3rd Annual Spinal Muscular Atrophy Golf Classic at Isleta Eagle Golf Course in Albuquerque. Through events like this, the New Mexico chapter works tirelessly to raise awareness of spinal muscular atrophy (SMA), funding for research, and support for the SMA Treatment Acceleration Act. While preparing for this year’s golf tournament, Desiree’s Buddies’ supporters happened to meet Darren Arnold, the sales manager for KNKT 107.1 FM and KLYT 88.3 FM. Moved by the cause, he helped the chapter produce a commercial which aired multiple times in the days leading up to the golf tournament, and he arranged for Karin Vallo, the chapter president, to be interviewed during a mid-day talk show.

Click here to hear the commercial.

Click here to listen to the interview.

FightSMA is proud to announce the dates of the 2010 Annual Conference: The Good Fight. The Researchers Conference will be held April 25-26 and will gather select researchers and scientists in an intimate setting to discuss the most recent research and clinical trials through presentations and open dialogue. The Families and Friends Conference will be held April 26-28 and will include a lay-friendly science briefing with Q&A, “Thriving with SMA” panel discussion, one-on-one consultations with panelists, and visits to Capitol Hill.

More information will be posted as it is available on the conference’s webpage: www.fightsma.org/index.php?annual_meeting_2010. For more information about past FightSMA conferences or about spinal muscular atrophy (SMA), visit www.FightSMA.org.