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Archive for June 2009 – Page 2

Driving to cure spinal muscular atrophy

Posted: June 18th, 2009 | By: Staff | No Comments
Thursday, June 18th, 2009

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:

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Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy News Stories

Wheels won’t stop these students

Posted: June 15th, 2009 | By: Staff | No Comments
Monday, June 15th, 2009

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 Gossett graduates from Law SchoolKatrina 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.

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Categories : Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy News Stories

South Carolina Congressman Signs on for the SMA Treatment Acceleration Act

Posted: June 10th, 2009 | By: Staff | No Comments
Wednesday, June 10th, 2009

The Palmetto Scoop, a political blog in South Carolina, is reporting that SC Congressman Joe Wilson has signed on as a sponsor of the SMA Treatment Acceleration Act.  That brings the total number of sponsors in the House of Representatives to 16.  The bill would provide federal support to complement the substantial private funding that national non-profit organizations are investing to find a treatment for SMA. Passage of this landmark legislation would enable investigators to mount national clinical trials to demonstrate that identified therapeutics are safe and effective for SMA patients.

To read more about the proposed legislation and to download your own copy, please visit Fight SMA’s spinal muscular atrophy legislative information page.  To read more about Congressman Wilson joining the effort to pass the bill into law, please click here: Wilson sponsors important SMA legislation.

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Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy News Stories

SMA Conference 2009 Video Now Available

Posted: June 10th, 2009 | By: Staff | No Comments
Wednesday, June 10th, 2009

The 2009 FightSMA Annual Conference featured a number of firsts, including the first-ever webcast of the event. Now, the video from that webcast is available for online viewing and download! You can watch it on the Conference 2009 page here at FightSMA. Just follow this link: FightSMA Annual Conference 2009

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Categories : Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Videos

Dr. Hung Li, a pioneer in SMA research

Posted: June 9th, 2009 | By: Staff | No Comments
Tuesday, June 9th, 2009

By Dr. Alex MacKenzie, Co-Chair of FightSMA’s Scientific Advisory Committee

It is with sadness we note the passing of Dr. Hung Li earlier this year. Dr. Li’s laboratory at Academia Sinica in Taiwan made a number of important and novel observations in the study of spinal muscular atrophy, all the more impressive given his was at a center with no prior record in SMA research. Dr. Li reported the first genetically and pathologically faithful murine model of severe SMA as well as the first report of treatment of these mice with an SMN2 inducing agent, butyrate. Latterly, he made the novel observation of a role for STAT5 kinase activation in the induction of SMN2, one of the first delineations of a mechanism of induction for this locus. As well he explored the role of apoptosis in SMA and reported on Valproate therapy in a small patient cohort.

In addition to his important SMA legacy, Dr. Li published widely on other issues including renal disease and novel therapies for stroke; clearly his was fertile and creative scientific mind. He was a quiet, kindly individual who reached out to a number of us with an invitation to Taiwan to visit his laboratory a number of years ago. A true pioneer in SMA research, he will be missed.

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Categories : Spinal Muscular Atrophy Science and Research
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