This summer, FightSMA and the Gwendolyn Strong Foundation (GSF) partnered in an effort to raise funding for spinal muscular atrophy (SMA) gene therapy research.

GSF’s goal is to raise $200,000 before the end of 2010. Today, they announced that they have reached the halfway mark.

From GSF:

Less than TWO months after launching our “$200K For SMA” fundraising campaign in support of promising SMA focused gene therapy research at Nationwide Children’s Hospital and The Ohio State University, friends, families, colleagues, coworkers, communities, and total strangers across the country - some impacted by SMA and many not - have come together to organize and execute an impressive laundry list of wonderful fundraisers totaling over - DRUM ROLL PLEASE - One Hundred Thousand Dollars. That’s right. $100,000!!! In…just…TWO…months.

There’s just no other way to say it - what’s happening here is incredible, inspiring, and humbling. And we are personally honored to be part of all of this positivity - it fuels us to push forward and do more. At our core, we’ve always believed in the power of the individual. And as individuals, if we collectively work together in a positive, productive fashion, we can have an enormous impact and change the status quo.

Click here to read the full announcement.

A huge “THANK YOU!” goes out to everyone who has been involved in raising funds for GSF’s “$200K for SMA” (read the list here) and FightSMA’s “Realizing the Dream” - campaigns worked together towards the same goal: to bring SMA gene therapy to clinical trial.

Tags: fundraising, gene therapy, Gwendolyn Strong, realizing the dream, spinal muscular atrophy

Even though spinal muscular atrophy (SMA) is the number one genetic killer of children under the age of two and is estimated to occur in 1 in 6000 births, all too often parents tell of a long and stressful path to their child’s SMA diagnosis. Many times this is simply due to a physicians inexperience with SMA and so the signs of the disease are not immediately recognized. But, the story of the Hoskins family of Greencastle, Indiana seems particularly burdensome. It involves ignored symptoms, lost medical tests, a misdiagnosis, and months of unnecessary intravenous treatment.

Thankfully, Zion Hoskins, just short of his second birthday, is doing well. His mom, Chelsea said, “It’s hard to watch him struggle. He’ll fall over, but he gets back up and keeps trying.” Even though Zion’s parents know that the future will likely include feeding tubes, breathing machines, and wheelchairs, they are optimistic that their son will have the opportunity to enjoy many of the same experiences as his peers. “It’ll be interesting to see how things progress,” Paul, Zion’s father, said. “I like to think Zion is going to prove all the doctors wrong.”

Read their story by clicking here.

Tags: children with SMA, diagnosis, families, Indiana, sma type 2, spinal muscular atrophy

Christopher Finlan, the author who used his debut novel “Not a Fire Exit” to raise funds and awareness of spinal muscular atrophy (SMA), is preparing a new project focused on families affected by the disease. With the support of Milverstead Publishing, he is asking families to share their personal stories and experiences with SMA to create a paperback book “for people to read for generations to come.” In addition, profits from sale of the book will be distributed to SMA organizations.

Click here to learn all the details of how to get involved.

Tags: adults with SMA, children with SMA, fundraiser, spinal muscular atrophy, teens with SMA

Our friends at Stop SMA in Mississippi are preparing for their fundraiser, Laugh Away SMA, to be held at the end of this week, August 6 at 7:30PM. The event will bring two nationally known comics, Ralph Harris and Henry Cho, to Jackson, Mississippi and funds raised will support research for a cure for spinal muscular atrophy (SMA). Jeff Horton and his daughter Evie, the reason the Hortons started Stop SMA, appeared on their local NBC news to tell the community about the event and the disease. Check out the video below.

For more information about the event and how to buy tickets, visit the Laugh Away SMA website.

Tags: fundraiser, Mississippi, Stop SMA, video

FightSMA is proud to have received $8,000 to support the “Realizing the Dream” campaign from two private foundations. The contributions were at the recommendation of individuals who champion FightSMA’s mission to accelerate the search for a treatment and cure for spinal muscular atrophy (SMA).

Requesting gifts from a foundation or organization or from a friend or relation is one way that supporters of the SMA community are channeling funding to SMA research. (Learn more about how to do this by clicking here.) But, for those who find this fundraising avenue to be inaccessible, there are other tools. These are just a few.

• Fighter Mom™ Manual - The Fighter Mom™ manual is a guide and reference tool to help mothers (and others) take on the challenge of “doing something” after they’ve discovered their child, grandchild, niece, nephew or special child in their life is battling any chronic and possibly life-threatening disease.
• Firstgiving - Firstgiving allows you to create a personal webpage to raise funds for FightSMA (listed as “Andrew’s Buddies Corporation”). Set a fundraising goal and then tell your friends and family by adding a link in your emails, website, blog, or social networking site.
• Causes - Are you a member of Facebook? If so, join the FightSMA (Andrew’s Buddies) Cause and you can use it to tell your friends about the “Realizing the Dream” campaign and engage them in efforts to collect donation for the fundraising project. (Have a birthday coming up? Use Causes to make a birthday wish for gene therapy.)
• GoodSearch and GoodShop - GoodSearch enables you to raise funds through the simple act of searching the Internet. Start your online shopping at GoodShop or download the toolbar and a percentage of what you spend will be donated to FightSMA at no extra cost to you!

To learn more about spinal muscular atrophy, the promise for SMA gene therapy, and the “Realizing the Dream” campaign, visit www.FightSMA.org.

Tags: fundraising, gene therapy, realizing the dream

On Saturday, July 10, Desiree’s Buddies, FightSMA’s New Mexico chapter, held it’s first annual bowling tournament. The fund raised will help support FightSMA’s mission to strategically accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), including FightSMA’s recently launched gene therapy fundraising initiative “Realizing the Dream“.

Thank you to everyone who came out to bowl and to support Desiree’s Buddies.

Tags: desirees buddies, fundraiser, New Mexico, realizing the dream, spinal muscular atrophy

On Sunday, June 27, 2010, Richmond local and spinal muscular atrophy (SMA) patient, Steve Eisenberg, h ad his voice heard loud and clear in the Richmond Times-Dispatch. Eisenberg, 32, wrote a letter to the editor about his story and his passion for seeing the SMA Treatment Acceleration Act (HR 2149, S 1158) become law.

Eisenberg thanked the Virginia delegation for their continuous support over the years, especially Congressman Eric Cantor (R-7th) for serving as the lead cosponsor for the bill. Mr. Eisenberg also spoke to the Congressman’s important position in leadership, and his ability to help us move this legislation forward as swiftly and efficiently as possible.

The SMA Treatment Acceleration Act, led by Congressmen Patrick Kennedy (D-RI) and Eric Cantor (R-VA) in the House, and Senators Debbie Stabenow (D-MI) and Johnny Isakson (R-GA) in the Senate, currently boasts 106 bipartisan cosponsors in the House, and 20 bipartisan cosponsors in the Senate.

To read Mr. Eisenberg’s editorial, please click HERE.

For more information on the SMA Treatment Acceleration Act and how to contact your Members of Congress, please contact Caroline Gibson, Public Affairs Coordinator (804-515-0080 or carolinegibson@fightsma.com).

Tags: adults with SMA, eric cantor, SMA treatment acceleration act, spinal muscular atrophy, Virginia

Last year, the Nyhuis family and their friends, family, and community organized their first lemonade stand to raise funds to support FightSMA’s mission to strategically accelerate research toward treatment and cure for spinal muscular atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death. Calling their group “Tatum’s Team,” after the young girl diagnosed with type 3 SMA, they raised $250.

On June 5th, they were at it again, holding another lemonade stand. This year they’re efforts were rewarded 500% as they raised $1,500 from supporters in their Virginia neighborhood and across the country who want to join the fight to end this disease.

Thank you to all the members of Tatum’s Team for your fantastic work!

Tags: fundraiser, SMA Type 3, spinal muscular atrophy, Virginia

Thank you to everyone who came out for 4th Annual Rubber Duck Race, organized by Patrick’s Buddies/FightSMA New Jersey, Sunday, May 23, 2010 in Westfield, New Jersey’s Mindowaskin Park. The crowds turned out for an awesome race and helped raise funds to support the search for a treatment and cure for Spinal Muscular Atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death.

Special thanks to the members of the Rutgers Scarlet Knights football team who showed their support for the fight against SMA and to the volunteers who made the event possible.

Pictured above: Patrick with Eric LaGrande and Mohammed Sanu
from the Rutgers Scarlet Knights

Check out more pictures and video from the Duck Race on the Westerfield Patch’s website.

Tags: fightsma, fundraiser, new jersey, spinal muscular atrophy, video

In February of 2009, Jonay Hipkins lost her 14 month old daughter Jordyn to type 1 spinal muscular atrophy (SMA), the most severe form of the neurodegenerative disease that kills more babies than any other genetic disease.

Last month, Jonay’s co-workers helped her honor Jordyn and all the other victims of the disease with a simple fundraiser. The entire staff of Mclaren Family Care in Grand Blanc, Michigan purchased FightSMA t-shirts and then made a donation of at least $5.00 to wear the shirt and jeans to work. In addition to raising $250 for SMA research, the staff also raised awareness of the disease. Thank you to the staff of Mclaren Family Care for joining the fight to end SMA!

Plans are already in the work to repeat the event later in the summer.

Tags: fundraiser, Michigan, SMA Type 1, spinal muscular atrophy