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

Very exciting news today from the U.S. Congress!  The SMA Treatment Acceleration Act of 2009 has been introduced in the U.S. Senate by Senators Debbie Stabenow (D-MI) and Johnny Isakson (R-GA).

Read more on Fight SMA’s Spinal Muscular Atrophy Congressional Information Page!

Tags: sma, SMA treatment acceleration act, spinal muscular atrophy

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

iParenting.com has chosen Bill Strong as this month’s Dad of the Month. After his daughter Gwendolyn was diagnosed with spinal muscular atrophy at about 6 months of age, Bill and his wife Victoria decided that despite the devastation they felt, they would not sit back idly. The Strongs contacted specialists around the country and began working with a team of doctors at Stanford University. They started a blog to “chronicle their journey with SMA” and are working on an addition website to help other families who receive life changing diagnoses. They have founded The Gwendolyn Strong Foundation to increase awareness of SMA and to fund much needed research. And the Strongs started what they might be best known for: the online Petition to Cure SMA to garner signatures in support of the SMA Treatment Acceleration Act, which was just recently reintroduced in the House of Representatives (H.R. 2149).

FightSMA congratulates Bill on the recognition of his work, and thanks both he and Victoria for all they have done!

Click here to read the full article.

Tags: petition to cure sma, petitiontocuresma.com, sma, SMA treatment acceleration act, spinal muscular atrophy

The Temple News, a student publication of Temple University, profiled sophomore Jimmy Curran in the May 5th issue. The third of four children, Curran is the only child in his family who has type 2 spinal muscular atrophy (SMA) - a genetic neuromuscular disorder that affects motor neurons in the brain stem and spinal cord and disrupts the production of protein necessary to maintain muscle strength.

Despite being confined to a wheelchair and suffering muscle weakness, Curran hasn’t let the effects of the disease dramatically change his life. He is majoring in business at Temple University and plans to own his own business in the future. Just like any other college student, he enjoys hanging out with his friends and listening to music.

To read the entire article, click here.

Tags: college, sma type 2, SMA Type II, spinal muscular atrophy