Attention SMA Families, Kids and Friends!

We want to share your story - starring YOU! FightSMA has a special campaign in early 2010 and we need your help. Send us videos of your family and children breaking barriers: from doing the unexpected (playing floor hockey, skiing, etc), to sharing a cool story about your family, to giving advice to other families, helping them make their lives just a little easier. In 2010, it’s all about you.

We’ll be picking our favorite videos to be showcased and to receive an extra cool prize. More details to come soon!

Please send your video submissions via email or hard copy, along with the patient’s name, age, SMA type, and a fun fact. Here’s how:

Electronically
carolinegibson@fightsma.com
Send us a link to the YouTube or other video hosting site, or via a filesharing website like YouSendIt

Hard Copy
From Our Family To Yours
Attn: Caroline Gibson
FightSMA
1807 Libbie Avenue, Suite 104
Richmond, VA 23226

Questions? Feel free to call or email Caroline anytime. 804-515-0080 or carolinegibson@fightsma.com.

By submitting a video for this campaign, you authorize FightSMA/Andrew’s Buddies to use the submitted footage in its original or edited form in any media. You also certify that to the best of your knowledge, all materials used in your video are your own or are materials for which you have obtained any necessary permissions. You further acknowledge that you submit the video freely and without expectation of compensation for any uses made of the submitted footage.

There is someone in the circles of people closest to you who would be delighted - in fact, honored - to make a major gift to FightSMA (www.fightsma.org). This may be a distant relative, a college friend who has “done well” or a business relationship who has become a friend.

For a person of means, a gift of $50,000 or even $100,000 is realistic. It’s not realistic for many of us (okay, pretty much ALL of us), but for someone who CAN make such a gift, it’s a blessing to them to make it. We have a responsibility, to the children we love and to the children we’ve met who are fighting SMA, to push through our own feelings of awkwardness or inadequacy - and we all have those feelings…all of us - and MAKE THE ASK.

So, take a deep breath. Or exhale a sigh of resignation…and read on.

And, hey, why are we on this planet anyway? To live cautiously and timidly? Are we supposed to end your days, saying “I should have…”

Hardly.

Listen to Shakespeare:

There is a tide in the affairs of men,
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.

So, the “Three Questions to Ask Yourself to Reach the Miracle.”

1. Who have I avoided sitting down with and making the hard ask, even though I KNOW they can make a very large gift? You may have asked them before, and after an uncomfortable and long silence, a few avoided glances, and some clearing of the throat, they said they’d think real hard about it and that was the last of it. It may have been five years since you’ve brought it up. But you need to do it again. They may have softened. They may be in a better place to consider it. If you don’t ask, you don’t get. Think about this person, then think of an approach. Talk through your approach with someone who knows you well and can bolster your confidence.

2. If I made a list of possible people to contact, have I exhausted all my circles? I bet you can come up with three good, realistic prospects. Think back to high school. Did you know that the quiet kid in the cadet corps who couldn’t play Taps has made several million dollars on Wall Street? Find him. Get back in touch. How about Uncle Harry? He just sold his carpet cleaning company. It wasn’t huge, but he cleared about $1.5 million. What’s he going to do with the money? Let the IRS have it? Stop him from dumping it down that rat hole. And what about acquaintances at church, in the Rotary? At work? Make a list of 10 relatives. Who do THEY know?

3. Have you visualized the amount of money you’re going to get? Think about fifty one-thousand dollar bills. Think hard about them. See those crisp, pretty bills in a suitcase, or in a big grocery bag. Enjoy the fact that you’re going to get someone to give them to you, for the most important cause of your life. In your mind, toss the bills up into the air and watch them flutter to the ground. Giggle about it. IT’S JUST MONEY, AND YOU CAN GET IT. Figure out an amount you want to ask for and make it feel real.

You can do this.

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.

Spinal Muscular Atrophy is too often unheard of among doctors. Over the years, FightSMA has been trying to build a list of medical professionals familiar with SMA and its effects. The existing list is a part of the SMA Guidebook on FightSMA’s website and can be found here. We would love the recommendations of SMA families and patients to help expand this list and to provide a valuable resource, especially to newly diagnosed families or those seeking a second opinion.

If you would like to recommend someone, we’d love to at least get their name, area of expertise and where they see their patients. If you have contact info, that would be even better. This information can be shared through email, Facebook, or Twitter.

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).

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.

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.