Not only was yesterday Mother’s Day, it’s also the time of year when most colleges are holding their graduation ceremonies. A story on the front page of the Chicago Tribune story yesterday celebrated both. Lucy Trevino, who has Spinal Muscular Atrophy Type 3 and is confined to a wheelchair, graduated this past weekend with an engineering degree. Her mother, Rosa, helped make it possible, by being right there with her in class, to assist with all of the things that SMA wouldn’t allow Lucy to do…

For the six years it took to get through one of the most rigorous programs in the College of Engineering, it was Rosa—a tad shy and always thinking two steps ahead—who got her daughter to every class, lab and study session. She knew which text and notebook to lay on Lucy’s desk. And she turned the pages when a heavy book tired Lucy’s hands.

For two or three hours, as Lucy absorbed lectures in calculus or thermodynamics or circuit analysis, Rosa sat not far away, just in case Lucy needed a sip of water or began choking.

To read the entire wonderful story, please visit the Chicago Tribune website. A video of Lucy and Rosa is also available on that page.

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Publicity works. That’s the lesson from the story of an SMA family that was turned down for a power wheelchair by their insurance company.

Realizing their son would never walk, the parents of three-year-old Liam Russell, who has Spinal Muscular Atrophy Type II, filed a claim with their insurance company, Assurant, for a power chair. Assurant, however, refused to pay for even a portion of the chair, saying their policies don’t cover electric wheelchairs.

Liam’s parents did two things in response to this, showing they’re true “Fighter Parents” — first, they started a fundraising campaign for donations to buy the chair themselves. They also appeared on national television to tell their story. ABC’s Good Morning America did a story on the family’s predicament and their insurance company’s response.

Lo and behold, Assurant responded after the airing of the story that they were reviewing their policies regarding power chairs. Shortly thereafter, they announced that they would in fact provide coverage for power chairs for new policy holders.

The Russell family will not need Assurant’s help. Their fundraising efforts brought them enough money to purchase Liam’s chair. However, their publicity efforts will help future families in similar situations.

To see video from the GMA story (and Liam, who is adorable), please visit the ABC News video site.

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FightSMA New York’s Second Annual Gallery Walking Tour will take place on Saturday, Nov. 3 from 2-4 pm at some of Chelsea’s most innovative and inspiring galleries.

New York, New York (PRWEB) October 31, 2007 — Participants in an upcoming walking tour of art galleries in New York’s Chelsea neighborhood will not only learn about featured artists and the inner workings of art galleries, they’ll also raise money for a child-killing disease. The SMA Walking Tour, to be held on November 3, 2007, will raise funds for research into spinal muscular atrophy. The tour will visit six different locations over a two hour period, allowing participants a behind-the-scenes look at how art galleries operate.

Spinal muscular atrophy (SMA) is the leading genetic killer of children under two. The neuromuscular disease causes a wasting of the muscles, robbing its victims of the ability to run, walk, crawl, play and, in many cases, even breathe or swallow.

“I’d like to thank the participants of the walking tour in advance for their support,” said Kathy Tompkins, chair of FightSMA’s New York chapter. “It’s critical that we find a cure for this disease, particularly since research into SMA benefits dozens of other disorders.”

The event is organized by Andrew’s Buddies of New York, the New York chapter of international nonprofit Fight SMA. The tour will begin at 2:00 p.m. and end at 4:00 p.m. Participants will start at Rare Gallery (521 West 26th Street) and continue on to DAmelio Terras, Friedrich Petzel, Nicole Klagsbrun, Lombard-Freid Projects, and Postmasters Gallery. Each gallery director will speak about the style of the emerging artist featured in the current exhibition.

The suggested contribution is $25 per person.

For more information ont the walking tour, please visit www.fightsma.org or call Caroline Gibson at (804) 515-0080.

About Fight SMA:
Headquartered in Richmond, Virginia, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. For more information on spinal muscular atrophy and Fight SMA, please visit http://www.fightsma.org The latest SMA news and research information is available at the Spinal Muscular Atrophy Blog, at http://www.fightsma.org/blog

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We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 3334, “The SMA Treatment Acceleration Act”, has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). U.S. Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA) plan to introduce companion legislation in the Senate when Congress returns from its August district work period. On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor and Senators Stabenow and Isakson for their leadership.

SMA is the number one genetic killer of children under the age of two. It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing. Approximately one in 40 people, or approximately 7.5 million Americans, carry the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being afflicted by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as the disease closest to treatment based on scientists’ advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups. Researchers have identified the gene responsible for SMA, as well as a disease modifying “back-up” gene that has opened the door to promising new treatment pathways. Research involving the modulation of genes stands to benefit not only SMA, but other genetic disorders, including Duchenne Muscular Dystrophy, Parkinson’s, and Alzheimer’s. In recent Congressional testimony by the NIH, it was noted that “research on SMA illustrates the path from gene to understanding to treatment.”

In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including FightSMA, Families of SMA, and the SMA Foundation, has united behind the SMA Treatment Acceleration Act, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, “The SMA Treatment Acceleration Act” provides for the following:

• Federal support for a national clinical trials network for SMA;
• Federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA;
• Establishes an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments;
• Establishes a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research;
• Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on the use of incentives to promote SMA drug development among private industry;
• Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Our organizations will be issuing a “Nationwide Call to Action” for all SMA families, researchers, and friends, to help engage every Member of Congress in support of the this bill and the great efforts of Congressmen Kennedy and Cantor and Senators Stabenow and Isakson.

Cynthia Joyce
SMA Foundation

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:

Laura Breiteneicher
SMA Foundation
laurab@wswdc.com

Spencer Perlman
Families of SMA
spencer@fsma.org

Caroline Gibson
Fight SMA
carolinegibson@fightsma.com

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Two charity events held nearly 150 miles apart recently spelled success for research into spinal muscular atrophy (SMA). The events raised a total of approximately $70,000, thanks to the dedication and hard work of volunteers from Georgia and Alabama. The volunteers were working to fund Fight SMA, an international organization dedicated to finding a treatment or cure for SMA. FightSMA will direct those funds to researchers doing work that could eventually spell the end of the disease that kills more children under two than any other genetic disorder.

The events, Birmingham SMAsquerade 2007 and SMAsquerade SMArdi Gras in Atlanta were each held on February 17, 2007. “SMAsquerade” is a signature fundraiser for FightSMA, and similar events have been held around the country by other chapters of the organization

“We’re very thankful for what these dedicated families and supporters from Atlanta and Alabama have accomplished,” said FightSMA president Martha Slay. “The hard work they have invested in these two events paid off, and will benefit everyone working to fight spinal muscular atrophy.”

In Atlanta, the event was held at the Trolley Barn in historic Inman Park. Guests arrived via trolley provided by Chattahoochee Trolley Company. They were entertained by honorary emcee Alpha Trivett from the radio station WSB FM and by music from Atlanta’s own Livin’ Large. The signature piece from the night’s silent auction was a spectacular multi-media painting by author, artist, and SMA dad Danny Schnitzlein.

Meanwhile, in the next state, organizers of Birmingham SMAsquerade were not to be outdone. This event was held at Ted’s Garage, a 1920’s Warehouse with cool classic and vintage cars on display. Guests enjoyed hors d’oeurves, a silent auction, and music by Lava Lamp, the preeminent 70’s band in the southeast.

Planning for the SMAsquerade event to be held in Richmond, Virginia is already underway. The theme this year will be SMAsquerade: Make Tracks! It is scheduled for October 13 in the Thalhimer Pavilion at Science Museum of Virginia.

Here’s a link to this release on PRWeb.
Media contact:
Steve Mullen
EndGame PR for Fight SMA
(804) 382-0017
steve @ endgamepr.com

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Media Contact:
Steve Mullen
EndGame Public Relations for Fight SMA

Richmond, Virginia (January 31, 2007) – Fight SMA, a Richmond, Virginia-based international organization devoted to finding a treatment or cure for spinal muscular atrophy (SMA), today announced the winners of the 8th Annual Hannah’s Buddies Charity Classic. The golf tournament was held on January 20, 2007 at the Grand Cyprus golf course in Orlando, Florida, and was organized by Hannah’s Buddies, the Tampa, Florida chapter of Fight SMA.This year’s winning foursome was made up of David Veghte, Richard Veghte, John Veghte, and Larry Hill.

After a day on the links, golfers and non-golfers alike headed to the House of Blues for an auction and dinner. They were also treated to a concert hosted by John Bell, lead singer of the band Widespread Panic. Mr. Bell is the godfather of Hannah Elliott, for whom Hannah’s Buddies is named. Featured at the concert were Michael Nichol and Sam Holt, as well as the bands Col. Bruce Hampton & The Aquarium Rescue Unit and Outformation.

“I’d like to thank everyone who helped make this event a great one,” said Duncan Elliott, who started the Fight SMA chapter with his wife, Laurie, and daughter, Hannah.

All money raised at the event will go toward research for a treatment or cure for SMA.

“This is a wonderful fundraiser that is made possible by a very dedicated chapter of our organization,” said Fight SMA President Martha Slay. “We’re extremely grateful to those who organized it, and everyone who participated.”

Approximately seven million people carry the SMA gene, unknowingly.

About Fight SMA
Headquartered in Richmond, VA, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. For more information on spinal muscular atrophy and Fight SMA, please visit www.fightsma.org.

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