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.

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.

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).

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.

Dear Friends,

We are well under way with our efforts on the SMA Treatment Acceleration Act. As you know, the bill was reintroduced in the 111th Congress in April by our lead sponsors: Rep. Patrick Kennedy (D-RI) and Rep. Eric Cantor (R-VA) in the House, and Sen. Debbie Stabenow (D-MI) and Sen. Johnny Isakson (R-GA) in the Senate.

As you are probably well-aware, both houses of Congress have been focused on Health Care Reform over the past several months. The Health Care Reform bills have required a tremendous amount of focus, attention, and effort from our Members of Congress, as well as health staffers, on both sides on the aisle. We have been told by multiple health staffers that they have been inundated with emails, meetings, and health care reform related work that has made it virtually impossible to steer their focus to any other issue at this time.

While we applaud the efforts of our Members of Congress for the incredible amount of care and attention put towards health care reform, it does mean that we, as supporters of the SMA Treatment Acceleration Act, are playing a different “ballgame.”

With the arrival of Congress’s month long August recess, it is more important than EVER that our Members of Congress hear our voices and turn their attention towards the SMA Treatment Acceleration Act.

Health Staff have said emphatically that it is absolutely imperative that you - friends, family and researchers - set up time to see your Senators and Congressmen at their district offices during the August break. By arranging meetings, sending emails, and making phone calls, you are setting the stage for our Members to, without hesitation, sign on as cosponsors and support this legislation when health care reform is “out the door.” We want to be at the TOP of the list of priorities when the Members begin to focus on other issues at hand.

We cannot stress enough the importance of an aggressive grassroots effort over the August recess. It really is up to you, members of the SMA community, to make your voices heard and get your Members of Congress on board as cosponsors of the SMA Treatment Acceleration Act.

You are a mighty army, as evidenced by the enormous, unprecedented success of a single-disease bill in the 110th Congress. Let us continue our efforts, ten-fold! Let’s make the 111th Congress, OUR Congress!

As always, FightSMA is here as a resource for you. Should you have any questions or concerns, or would like help setting up meetings in your district offices, our phone lines (as well as email) are always open.

Please feel free to contact me at any time:
804-515-0080
carolinegibson@fightsma.com

Thank you all for everything that you do. We are continually inspired by your heart, dedication, and determination in fighting the good fight.

Warmly,
Caroline Gibson
Public Affairs Coordinator
FightSMA

FightSMA is pleased to announce that the Newman’s Own Foundation has awarded the organization a $5,000 grant. Newman’s Own Foundation is a private, independent foundation established by Paul L. Newman. The Foundation continues the commitment of Paul to donate all net profits and royalties earned from the sale of Newman’s Own products to charity. As of June 2009, over $267 million has been donated to thousands of charities around the world.

FightSMA is a 501c3 non-profit organization headquartered in Richmond, Virginia. The organization is dedicated to finding a treatment or cure for Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two.

To see the announcement in the Richmond Times-Dispatch, click here.

Earlier this year, the community of Mechanicsville, Virginia came together to celebrate nine successful years of raising funds for the fight against spinal muscular atrophy (SMA), led by the hard work and determination of Carice Smith. After getting over the initial shock of her son Andrew being diagnosed with SMA, Carice has said that she knew she had to take a pro-active stand. This stand took the form of the “Strike Out SMA Bowlathon” which was held annually, missing only one year due to illness. For the 10th year, family and friends decided to throw a party to honor the work of Carice, Andrew, and all their supporters - and to raise money to support SMA research.

Check out the slideshow of pictures from the party below, and to see the list of generous corporate sponsors and learn more background information about the event, click here.

Kenny Wallace of Midlothian, Virginia, is fighting Spinal Muscular Atrophy (SMA) every way he knows how. Wallace is the father to Taylor, age 4, who is affected by SMA, the number-one genetic killer of children under the age of two. In addition to raising funds in his community for SMA research, Wallace has taken a very personal approach to raising awareness about the disease. Wallace recently got the FightSMA logo tattooed on his arm — a permanent declaration of his commitment to eradicating this terrible disease.

Grassroots efforts and work on Capitol Hill is fully underway to support the SMA Treatment Acceleration Act in the 111th Congress. The SMA community continues its combined collaborative efforts.

Taking advantage of its proximity to Washington, FightSMA visited Capitol Hill June 8th and 9th. Martha Slay, President of FightSMA, and Caroline Gibson, FightSMA Public Affairs Coordinator, traveled to Washington to advocate on behalf of the SMA Treatment Acceleration Act. They were able to meet with a number of health staffers and visited over 35 offices on Capitol Hill. Because of family constituent visits in April, meetings throughout the spring, and this recent trip to Capitol Hill, every Member of key committees has received materials and personal outreach regarding this paramount legislation for Spinal Muscular Atrophy research.

FightSMA and its partners are committed to the success of this first-ever SMA legislation, and plan to return to Capitol Hill throughout the 111th Congress.

The Virginian-Pilot newspaper printed a story Sunday about the family leading FightSMA’s chapter in Virginia Beach, Virginia. The article touched on aspects that many families affected by spinal muscular atrophy (SMA) face: the shock of the diagnosis, the struggle to fight the disease, and the loss of a child. But, the article also recognized the promise and hope brought about by research being done around the country and the need for the fight to continue.

The Saville Family openly speaks about their experience of learning their daughter Morgan had SMA, of raising awareness and funding, of seeking treatment, and of her death in 2005. They also discuss how their efforts to defeat SMA have been renewed following their new baby’s birth, diagnosis, and enrollment in Dr. Kathy Swoboda’s pre-symptomatic study, funded in part by FightSMA. Stacy Saville and her son, accompanied by Virginian-Pilot photographer Genevieve Ross, attended the FightSMA Annual Conference in April and traveled to Capitol Hill to advocate for the SMA Treatment Acceleration Act.

To read the full article, click here. Below is a lovely slide show that the paper also put together.