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.

Congratulations to our friends at the Gwendolyn Strong Foundation. Their phenomenal outreach across the internet successfully garnered enough votes for the Foundation to be named to Top 100 list in the Chase Community Giving Campaign on Facebook. This honor comes will a $25,000 award and the chance to move on to round two where they will compete for a $1 million grant.

From the Gwendolyn Strong Foundation:

December 16, 2009
Gwendolyn Strong Foundation Top 100 Charity, Wins $25,000 Grant From Chase Facebook Campaign

This is truly unbelievable, incredible!

Today, we received news from Chase that the Gwendolyn Strong Foundation was selected as one of the top 100 charities, based on YOUR votes, in their Chase Community Giving campaign on Facebook. Thus, GSF will receive a $25,000 grant from Chase and will advance to round 2 of the campaign with a chance to win as much as $1 Million.

We’re still gathering information and to be honest it’s still sinking in, but we wanted you all to know this amazing news right away since none of this would have been possible without each and every single one of your votes and your personal, passionate efforts to prop the Gwendolyn Strong Foundation up on your shoulders. This is another humbling example of how this vibrant, active SMA community and every person that this horrible disease touches can collectively accomplish anything that we put our minds to as one, united, motivated voice.

We are excited to be donating 100% of this grant to Dr. Hans Keirstead’s promising SMA stem cell program at UC Irvine. As most of you know, this groundbreaking research has the potential to cure SMA and have a material, positive impact on all science forever. We know that this grant will help Dr. Keirstead and his team accelerate the process to get this treatment to human clinical trials as safely and efficiently as possible and to the children in need of a cure.

From the bottom of our hearts, thank you, thank you, thank you to each and every one of you. Now, on to ROUND 2! As a community, let’s go get that $1 MILLION to help CURE SMA once and for all!

Click here to go to the Chase Community Giving campaign on Facebook to see the top 100 charities.

Click here to read the press release from Chase.

Don’t know what spinal muscular atrophy (SMA) is? Learn more here.

This request comes from Bill and Victoria Strong of the Gwendolyn Strong Foundation and Neda Zadeh, M.D., Medical Genetics Fellow at Stanford University. They are reaching out to mothers of children with spinal muscular atrophy to ask if they would participate in a study that “may help pave the way for SMA carrier screening to be offered to more women.”

From: Neda Zadeh, M.D. — To the Claire Altman Heine Foundation:

You are invited to participate in a research study on the possible association between Nuchal Translucency (NT) measurement and fetuses affected with Spinal Muscular Atrophy (SMA). Our goal is to determine whether there is an association between increased NT measurements and SMA. If so, diagnostic testing for SMA may be offered to women with increased NT and no evidence of a chromosome abnormality of the fetus. We are only recruiting mothers of children confirmed to have SMA by molecular testing.

Involvement in this study is entirely voluntary and confidential. It will require your permission to access particular medical records for both you and your child. Your participation will not involve invasive procedures such as blood draw or tissue sampling. There will be no monetary compensation for your participation.

If you are interested in participating, or would like to hear more about this study, please contact me at (650)721-1439.

Sincerely

Neda Zadeh, M.D.
Medical Genetics Fellow
Stanford University
Division of Medical Genetics

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.

November 2, 2009

Dear SMA families, researchers, clinicians and friends,

Thank you again for all you have done to help increase awareness and attention towards our efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). As we continue to promote the SMA Treatment Acceleration Act (H.R. 2149/S. 1158) in the current Congress, many important questions have been posed regarding the status of the bill, the political climate in Washington, and the need for sustained grassroots engagement. In response to these queries, we have put together a list of frequently asked questions (FAQs). Please find below answers to these FAQs.

We hope that this information clarifies the incredible progress made to date and the path forward for the SMA Treatment Acceleration Act. Your continued support for the Act is the key component of our strategy to see this legislation enacted. While we cannot make guarantees of success, we can state unequivocally that we are making excellent progress and have a strategy in place to accomplish our goal. The legislative process requires persistence and patience - please continue to remain engaged and active participants as you are integral to our success.

Thank you very much for your continued support and involvement.

Sincerely,
The SMA Government Relations Team

Spencer Perlman
Families of SMA
spencer@fsma.org

Caroline Gibson
FightSMA
carolinegibson@fightsma.com

David Miller
MDA
dmiller@mdausa.org

Laura Lay
SMA Foundation
llay@wswdc.com

NOTE: If you have additional questions about the “SMA Treatment Acceleration Act” or for more information, please feel free to contact us at any time.

FAQs about the SMA Community’s Progress with the SMA Treatment Acceleration Act

Q1: Where do we stand with the SMA Treatment Acceleration Act? How does our pace compare to the previous Congress?

The SMA Treatment Acceleration Act has made good progress thus far in the 111th Congress, which runs from January 2009 - January 2011. The Act was reintroduced in the House of Representatives at the end of April and in the Senate at the end of May following months of discussion between the SMA community and the bill’s sponsors, staff for the congressional committees with jurisdiction over health care matters, and federal agency partners.

Thanks to our community’s tireless outreach over the past several months since reintroduction, the SMA Treatment Acceleration Act already has gained 57 cosponsors in the House and 15 cosponsors in the Senate, placing us well ahead of our pace in the 110th Congress. (A list of current cosponsors can be found below.) In fact, nearly half of our cosponsors in the House have been added in the five weeks since Congress returned from its August recess, a testament to the power of our community’s collective voice and the momentum we have achieve.

Q2: Why have some Members of Congress who previously supported the Act not yet signed on to the newest version?

It is important to understand the current political climate in Washington in order to appreciate the speed with which the Act is gaining support among lawmakers. For most of 2009, health care reform has been an all-consuming process for Members of Congress and their health care staff, largely eclipsing all other health-related measures in Congress. Thus, many of our supporters in Congress have not yet had the time to consider the changes to the bill and express their support. This does not mean that those Members will not cosponsor the legislation, but rather, that an unprecedentedly busy legislative calendar has demanded that all of their time and is focused on the health care reform at this time.

Please know that the calls, letters and e-mails from the SMA community are not being ignored by Members or their staff. In fact, our continued outreach remains integral to the success of this bill as it builds support for the legislation and will make the SMA Treatment Acceleration Act a priority for lawmakers when health care reform is complete.

Q3: What are our next steps? What is the plan for the remainder of 2009 and 2010?

Congress hopes that the health care reform debate will be completed by the end of calendar year 2009. With this massive endeavor out of the way, committee staff and Members who have spent almost the entire year working around the clock on health care reform will be freed up to consider other health-related legislation. All of the SMA community’s efforts for the remainder of 2009 will be in preparation to step into this “void” and make real progress later this year once health care reform is completed and in 2010.

Later this year or beginning in January 2010, the congressional committees with jurisdiction over the SMA Treatment Acceleration Act (the House Energy & Commerce Health Subcommittee and the Senate Health, Education, Labor and Pensions (HELP) Committee) are expected to entertain health-related bills with broad, bipartisan support. The SMA Treatment Acceleration Act falls under this broad categorization; however, there are hundreds of such bills and the Committees will likely take up only those bills that are entirely “non-controversial”, meaning that every member of the committee is comfortable with the legislation or does not have major objections to its consideration. In order for the SMA Treatment Acceleration Act to be considered in this process, the SMA community must continue to engage lawmakers to educate them about the Act and to build our base of support so that we are prepared to receive Committee consideration when the time comes.

Q4: What can I do to help?

Please continue to engage every Member of Congress in support of the SMA Treatment Acceleration Act by writing and calling your Senators and Representatives. Personalized calls and letters to Members of Congress from the SMA community are the most effective methods of advocating for the SMA Treatment Acceleration Act. In the immediate months, as health care reform continues to dominate the political stage, you should continue to ask friends, family and community members to write letters of support to their Members of Congress encouraging them to cosponsor the legislation. This outreach will lead to more cosponsors and will impact the decision makers on the committees of jurisdiction.

Current Cosponsors:

In the House (57):

In the Senate (15):

To download this update, click here.

Mike Bush, news anchor for KSDK’s NewsChannel 5 in St. Louis, did a piece about a recent show at the Touhill Peforming Arts Center at the University of Missouri-St. Louis. But, being a musical version of a classic Mark Twain novel is not what made “The Adventures of Tom Sawyer, the Musical” extraordinary. This show was put on by the Variety Children’s Theater which provides children and teens with disabilities the opportunity to work alongside professionals in all parts of the production, including on-stage performance, costume design, set design, stage management, etc.

One of the children spotlighted in Bush’s report is Kaci Conley, a ten year old with spinal muscular atrophy (SMA). When she was born, Kaci’s parents were told she wouldn’t even speak. Through hard work she has proved the prediction wrong, winning the role of Penny Temple in the musical and singing and dancing with all the other actors.

To read the full article or watch the video of the news report, click here.

Bill Strong, who founded the Gwendolyn Strong Foundation with his wife Victoria and who recently joined the FightSMA Board of Directors, was invited to do a radio interview for “Focus on Issues.” This wonderful interview, which aired four times during this past weekend, covers a broad range of subjects from how the Strong’s daughter Gwendolyn is doing to the need for more research to how individuals can help in the fight against spinal muscular atrophy (SMA).

Click here to listen to the whole interview

The H1N1 flu has added even more stress to a season that is already very tense for families affected by spinal muscular atrophy (SMA) - cold and flu season. Here are a couple of notes that will hopefully help these families.

Doctors have recommended that SMA patients get both the regular and swine flu shots.

MDA has advised that “the intranasal form (sprayed into the nose)…variety of the vaccine is not recommeded for those affected by neuromuscular disease since it contains an attenuated (weakened) form of the H1N1 virus.”

Dr. Kathy Swoboda, of the University of Utah, has recommended that parents of “fragile children with SMA to get a prescription if possible for tamiflu, to be started at the earliest onset of flu-like symptoms” and that “those vulnerable individuals who are exposed to actively infected family members living within a household should begin treatment as well.” She also recommended that families “consult with your doctor regarding individual specific circumstances.” (For more information, click here. SMASpace membership and login required.)

Additional resources for getting through this flu season:

• CDC’s 2009 H1N1 Flu (Swine Flu)
• Action Steps for Parents of Children at Higher Risk for Flu Complications
• MDA’s H1N1 Resource Center
• Flu.gov
• H1N1 Flu Self-Evaluation
• CDC Says “Take 3” Actions To Fight The Flu

The Horton Family has known about spinal muscular atrophy (SMA) for less than two years, but they are rapidly becoming strong advocates for SMA families and research - visiting Mississippi’s members of Congress and engaging their community in the fight against the disease. One way that the Horton’s reach out is through newspaper articles, another of which was just published by The Clarion-Ledger, which circulates statewide.

From this article:

Evie Horton, 3, glides across the living room in her wheelchair.

Two years ago, she was a seemingly normal toddler. Her dad, Jeff Horton, recalls thinking, “She’s gonna walk any day now.” But she never did.

So concerned, Horton and wife, Dee, of Flowood took Evie to an orthopedic specialist in March 2008, but tests didn’t reveal any problem.

By April, Evie quit putting weight on her legs altogether. She was referred to a pediatric neurologist, and within a couple of months, was diagnosed with spinal muscular atrophy - a genetic disease that causes muscles to weaken and become useless.

It is the No. 1 genetic cause of death of children 2 and younger and about one in 6,000 infants are born with it.

The article also says:

This past summer, they wanted to do something on a larger scale to help others coping with SMA. Jeff reached out to politicians and received support from Congressmen Gregg Harper and Bennie Thompson, and Sen. Roger Wicker, all of whom co-sponsored the SMA Treatment Acceleration bill. Gov. Haley Barbour declared August Spinal Muscular Atrophy Awareness Month.

Later, with the help of friends, family and co-workers, the couple started the Stop SMA Foundation to raise awareness and fund research, specifically for treatment or drugs nearing FDA approval.

Funds generated may help usher in real hope for SMA patients because experts say a treatment or a cure is possible within five years.

To read the full article, click here.

For information about the SMA Treatment Acceleration Act, click here.

Michael Jay Paskin and Steve Taylor don’t appear to know each other, but from opposite sides of the country, both are using their physical strength to fight a deadly disease that robs its victims of their strength - spinal muscular atrophy (SMA).

Paskin is training to complete the Ironman Arizona triathlon which consists of a 2.4 mile swim, a 112 mile bike, and a 26.2 mile run. He started TriathlonForACure.com to document his training, but also to raise awareness of SMA and funds for the Gwendolyn Strong Foundation. Paskin says that his goal “is to parallel the hard work and determination it takes to complete each triathlon with the hard work and determination it will take to eliminate SMA.” To read more about Michael Paskin’s efforts, click here.

Last month, Taylor completed a 50-mile “ultra marathon” in Washington, DC. The police officer from New Bedford, MA ran in honor of his friends’ 22-month old son Owen who has SMA. Taylor said, “I was thinking of Owen and that drove me not to quit.” Through this race, Taylor was able to raise $3,000 in donations for Owen’s family and he plans to run an even longer race in Owen’s honor next year. To read more about Officer Taylor’s run, click here.