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!”

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:

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.

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.

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.

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.

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.

Stacy Zoern, a 30 year old attorney living in Austin, Texas, has written a memoir called I Like To Run Too, Two Decades of Sitting. The book is about her experience growing up with spinal muscular atrophy (SMA). The book describes the challenges she faces living in a wheelchair and the help she requires to accomplish daily tasks due to SMA’s effects. In a recent interview, she said, Zoern spoke about how her aides help her prepare in the morning for work, saying:

“You know all kinds of things, like I can’t reach the clothes in my closet. I need help picking my clothes, helping me use the restroom, taking a shower, washing my hair. I can’t even pick up my hands to wash my own hair. Then we part ways and I’m independently able to go to work right down the street.”

The interview goes on to say that “Zoern hopes her book inspires others living with disabilities to continue with their dreams despite physical limitations.”

To watch the interview or to read the report, click here.

A team led by University of Wisconsin-Madison researcher and 2006 FightSMA Annual Conference presenter Dr. Clive Svendsen has shown that they can create a model of spinal muscular atrophy (SMA) in a petri dish.

Building on research previously reported which allows scientists to force skin cells to act like embryonic stem cells, the team used skin cells from a boy with SMA to create SMA affected motor neurons in the laboratory. Because these motor neurons are outside of a patient, researchers expect to be able to observe the rate of motor neuron death and test interventions much easier and safer.

The team’s findings have been published by the journal Nature. The article is “Induced pluripotent stem cells from a spinal muscular atrophy patient” by Allison D. Ebert, Junying Yu, Ferrill F. Rose, Jr., Virginia B. Mattis, Christian L. Lorson, James A. Thomson and Clive N. Svendsen.

For more information, click here to read one of the many news articles on this breakthrough.

Many families battling spinal muscular atrophy (SMA) could write volumes full of stories about their difficulties with insurance companies and their selective coverage. Thanksgiving day, the Washington Post ran a piece about a northern Virginia family who has a story to add to that tome.

Columnist Joe Davidson introduced the Rogers family. Shelby Rogers is eleven years old and has type 2 SMA. Davidson describes some of the equipment around her bedroom used to help her breathe, cough, and move. Shelby’s father, John, works for the federal government and the family is covered by Aetna insurance through his employer. Next year, Aetna is dropping coverage for the private nursing assistance that the family relies on to care for Shelby. While Shelby has Medicaid, it does not provide enough to pay for the nurses who dress and bathe Shelby, turn her as she sleeps, and exercise her weakening muscles.

To read the full article, click here.