On June 20th, Joshua’s Buddies, FightSMA’s chapter in Troy, Michigan, held its 10th Annual 5K Run/Walk/Roll to raise funds for Spinal Muscular Atrophy (SMA) research. Despite concerns about rain, crowds turned out to show their support of the fight against SMA - the #1 genetic killer of children under the age of two.

Thank you to the Cueter family (pictured below) and all their supporters for 10 great years!

Tags: fundraiser, Joshuas Buddies, Michigan, spinal muscular atrophy

Patrick’s Buddies’ 3rd Annual Rubber Duck Race was a tremendous success! Held Sunday, June 7, 2009 at Mindowaskin Park in Westfield, NJ, the race is estimated to have raised between $13,000 and $14,000 for spinal muscular atrophy (SMA) research. According to Maureen Higgins, head of the New Jersey chapter of FightSMA, the generosity shown by their supporters is extremely impressive given the charities in their area have been suffering during the economic downturn.

Recognition must be given to the employees of PTC Therapeutics for their tremendous support. Headquartered in South Plainfield, NJ, they had a “gaggleometer” in the office to tally their donations, which reached close to $1,000 from the individual employees! One of the PTC scientists who works on SMA, Amal Dakka, attended the event and helped Patrick give the signal to dump the ducks in the water at the start line. Maureen said, “I was very excited to have their support. It’s great that our supporters can see an actual scientists who benefits from this crazy duck race we throw every year!”

Tags: new jersey, PTC Therapeutics, spinal muscular atrophy

Update to posting “Driving to cure spinal muscular atrophy“:

Newspapers and press outlets across the country have picked up on the story of the Strong’s journey. Even the Associate Press ran an article. Check out some of the news pieces by visiting The Gwendolyn Strong Foundation press page

Tags: fundraiser, Gwendolyn Strong, spinal muscular atrophy

Bill and Victoria Strong of Santa Barbara, California dove into the fight against Spinal Muscular Atrophy (SMA) after their daughter Gwendolyn was diagnosed with the most severe form of the disease, type 1. Not only did the Strong Family found the Gwendolyn Strong Foundation to raise awareness and research funding, but they started the Petition to Cure SMA. More than 64,800 people worldwide have signed the petition to show their support for the SMA Treatment Acceleration Act which was re-introduced in both the House of Representatives and the Senate.

The Strongs recently began a new project - turning a family reunion into an opportunity to raise awareness and funding for SMA research. The family will be driving from California to Mississippi, 5,000 miles round trip, so that Gwendolyn can meet her 104 year old great-grandfather. They are asking donors to Sponsor a Mile, with the proceeds going to support the Foundation’s mission.

The Strong’s and their campaign were profiled by Santa Barbara’s KEYT-3 news:

Tags: fundraiser, Gwendolyn Strong, petition to cure sma, SMA treatment acceleration act, SMA Type I, spinal muscular atrophy

As it is the end of the school year, students across the country are graduating from their respective schools, including Katrina Gossett and Zak Schmoll. They are different ages, live in different cities, and were recently profiled by different newspapers. But they share at least two similarities: they both have spinal muscular atrophy (SMA) and they aren’t letting it hold them back.

Katrina just graduated with honors from the University of Chicago Law School. With her assistance dog Duke by her side, Katrina was the first wheelchair bound student to graduate from the school. During her three years at the University, she worked to make the school more accessible, in addition to her course study, work at a legal clinic, and participation in a law school musical. Click here to read the full article.

Zak will be speaking during his graduation ceremony as the salutatorian of his class. The seventeen year-old has been in a wheelchair since the age of 3 and despite enduring multiple surgeries to counteract the effects of SMA, Zak excelled academically. He hopes to turn that success into a business degree and possibly into a career in the business-side of sports. Click here to read the full article.

Tags: adult with SMA, college, spinal muscular atrophy

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.

Tags: conference 2009, fight sma, fightsma, Kathy Swoboda, presymptomatic, sma, SMA treatment acceleration act, spinal muscular atrophy, Virginia

On Saturday, May 16th, a group of children in Virginia held a lemonade stand to raise money for the fight against spinal muscular atrophy (SMA). The group rallied around their friend and neighbor Tatum who was diagnosed with SMA type 3 just over a year ago.

By selling lemonade, baked goods, and snacks, these young people were able to collect $250 for FightSMA to support SMA research and were also able to inform their neighbors about this crippling disease.

Tags: fight sma, fightsma, fundraiser, SMA Type III, spinal muscular atrophy, Virginia

FightSMA has produced a slideshow of photos from the 2009 FightSMA Annual Families and Friends Conference: The Good Fight held April 27-28 in Washington, D.C.  Please check out the images below.  To read more about the event, please visit the 2009 Annual Conference page!

Thank you to our attendees, corporate sponsors, Thriving with SMA panelists, and photographer Ralph Alswang.

Tags: conference 2009, fight sma, fightsma, spinal muscular atrophy, The Good Fight, Thriving with SMA

Just over a year ago, Lucas Cade Clark, pictured above, was born. When he was just four months old, he was diagnosed with Type 1 Spinal Muscular Atrophy (SMA), the most severe form of the disease. The Believe In Lucas Clark Foundation was created by his family and friends to help raise funds and awareness to find the cure for SMA.

The Foundation is about to hold its first fundraiser at the end of the month. The first of what is planned to be an annual golf tournament will be held at the South Riding Golf Club in South Riding, Virginia on May 29th. Registration and sponsorship information is available on the Foundation’s website. A portion of the proceeds will be donated to FightSMA.

Tags: fight sma, fightsma, SMA Type I, spinal muscular atrophy, spinal muscular atrophy events

Congressman Eric Cantor (R-VA) meets Greg Tapley from Fight SMA’s Georgia chapter, following the recent Fight SMA Conference in Washington D.C.  Greg thanked Congressman Cantor for his sponsorship of the SMA Treatment Acceleration Act, which he and Congressman Patrick Kennedy (D-RI) re-introduced in the House of Representatives on April 28, 2009.

Tags: conference 2009, sma, spinal muscular atrophy