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

Grassroots efforts and work on Capitol Hill is fully underway to support the SMA Treatment Acceleration Act in the 111th Congress. The SMA community continues its combined collaborative efforts.

Taking advantage of its proximity to Washington, FightSMA visited Capitol Hill June 8th and 9th. Martha Slay, President of FightSMA, and Caroline Gibson, FightSMA Public Affairs Coordinator, traveled to Washington to advocate on behalf of the SMA Treatment Acceleration Act. They were able to meet with a number of health staffers and visited over 35 offices on Capitol Hill. Because of family constituent visits in April, meetings throughout the spring, and this recent trip to Capitol Hill, every Member of key committees has received materials and personal outreach regarding this paramount legislation for Spinal Muscular Atrophy research.

FightSMA and its partners are committed to the success of this first-ever SMA legislation, and plan to return to Capitol Hill throughout the 111th Congress.

Tags: fight sma, fightsma, Martha Slay, SMA treatment acceleration act, spinal muscular atrophy, washington dc

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

The 2009 version of “The Good Fight”, Fight SMA’s Annual Spinal Muscular Atrophy Conference, wrapped up on Tuesday, April 28 and it was another successful year!

Here are a few of the highlights:

• 20 researchers and two additional graduate students from the National Institute of Neurological Disorders and Stroke (NINDS) were in attendance.

• Three of the attending scientists joined five additional doctors and healthcare professionals in an educational panel for attendees of the “Families and Friends Conference.”  This year’s panelists were Thomas Crawford, M.D., Tina Duong, MPT, Craig P. Eberson, M.D., Sally Evans, M.D., Sarah Feasel, MEd, RD, LD, CNSC, Mary Schroth, M.D., Kathy Swoboda, M.D., and Alex MacKenzie, M.D., Ph.D.

• On April 28, many of the families, friends and researchers descended on Capitol Hill to advocate for Spinal Muscular Atrophy and the SMA Treatment Acceleration Act, visiting the offices of more than 65 Congressional Representatives.  After a productive day, the SMA community was thrilled to learn that HR 2149, the SMA Treatment Acceleration Act, had been re-introduced in the House of Representatives.  FightSMA thanks all of our families, friends and researchers for kicking off the 2009 advocacy efforts in a big way!

• For the first year, Fight SMA offered a webinar of the Families and Friends panels.  The webinar was a success, with 30 participants from 13 U.S. states and a total of four countries.  Those who utilized the webinar said the experience was great!

We’re thankful for the contributions of everyone who made this conference a success, and for our sponsors, who made it possible: PTC Therapeutics, Genzyme, Hill-Rom Company, ISIS Pharmaceuticals, Psychogenics, Permobil, The Medi-Kid Co., and Exceptional Parent Magazine.  A special “thank you” goes to Hill-Rom Company and Genzyme, which not only sponsored the event, but also sent representatives to attend the Families and Friends Conference!

Tags: conference 2009, spinal muscular atrophy

It’s just a couple of days until the deadline to sign up for the free webcast of this year’s Fight SMA Annual Conference.  Response has been great!  In fact, it’s been international!  Here’s a rundown of who will be viewing the first ever webcast of “The Good Fight”, Fight SMA’s 2009 Annual Conference:

• Thus far, 31 people/families have signed up.  This means we have NINE spots left.
• The families signed up thus far represent 14 states in the U.S.: California, Florida, Kentucky, Massachusetts, Michigan, Missouri, Nevada, New Jersey, New Mexico, North Carolina, Ohio, Rhode Island, Utah, and Virginia.
• The webcast will reach a total of four continents!  In addition to the webcast participants in the U.S., families in Australia, Canada, India, and Romania have signed up.
• The webcast participants include adults and children with SMA Type 1, SMA Type 2, and SMA Type 3.

This webcast is helping the annual conference become what we’ve always hoped it would be — an educational opportunity that is available to everyone.

As mentioned previously, there are only nine spots left!  To take advantage of this FREE webcast, please contact Heather Lennon at Fight SMA via email by April 23!

Tags: conference 2009, webcast

The current economy, health issues, and other difficulties are keeping some from attending the 2009 FightSMA’s Families and Friends Annual Conference in Washington, DC. We are so sorry that these families cannot be with us, but we have some terrific news. This year we are pleased to offer remote access to a portion of the conference. On April 27th, the basic science update (5:00 - 6:00PM Eastern Time) and the Thriving with SMA Panel (6:30 - 8:15PM Eastern Time) will be webcast. Parents will be able to access the dynamic science and research update in real time from their home computers and join in the exchange with professionals who impact their children’s daily lives by chat room.

A limited number of spaces will be available for the webcast on a first come, first serve basis. If you would like to take advantage of this opportunity and sign up for one of the spaces, please email Heather Lennon by April 23rd.

For more information about the FightSMA Families and Friends Conference or about spinal muscular atrophy (SMA), please visit the FightSMA website at www.FightSMA.org.

Tags: FightSMA Annual Conference, spinal muscular atrophy, The Good Fight, Thriving with SMA

The Richmond Times-Dispatch this week profiled an effort that benefited Fight SMA last month. Mondial Assistance, an international travel insurance and assistance provider with U.S. operations based near Richmond, Virginia, purchased December air time on WWBT-TV and produced spots featuring the women whose efforts improve the lives of others. One of those spots profiled Fight SMA President Martha Slay. Here’s an excerpt from the Times-Dispatch article:

Martha Slay, founder and president of FightSMA, was selected for helping to raise funds to support research and treatment for Spinal Muscular Atrophy (SMA), the leading genetic killer of children under 2. Slay, of Richmond, has helped raise more than $6.5 million.

Founded as a nonprofit organization in 1991 after Slay’s oldest son, Andrew, was diagnosed with SMA at 14 months of age, FightSMA has 19 chapters in the U.S. and Canada. It supports SMA research projects at more than 40 universities and institutions in the U.S., Canada, United Kingdom, France and Italy. Most recently, Slay helped to create the “Fighter Mom” program that helps mothers deal with a variety of childhood health disorders.

You can read the entire article here.

Tags: fight sma news, mondial assistance

Richmonders should pay a little closer attention than usual to commercial breaks on WWBT-TV (NBC 12) in the coming weeks.  That’s because Fight SMA will be featured in a 30-second spot on that station that will air throughout December.  The spot is part of a partnership between Mondial Assistance and WWBT.  The “World of Good” promotion honors people in the community who do a world of good for others.  Fight SMA President Martha Slay was chosen as one of these people. 

We’re very proud of this honor, and very grateful to Mondial Assistance and WWBT for giving us this opportunity to spread the word about Fight SMA!

You can watch the commercial below:

Here is a list of the air dates and times on WWBT-TV, NBC12:

12/13/08: 12 News on Saturday 9-10am (2x)
12/16/08: 12 News at Noon 12-12:30pm
12/16/08: News at 5:30pm
12/17/08: 12 News at Sunrise 5am-5:30am
12/17/08: 12 News at Noon 12-12:30pm
12/18/08: 12 News Today 6-7am
12/18/08: Dr. Phil 3-4pm
12/22/08: Dr. Phil 3-4pm
12/22/08: 12 News at 6pm-7pm
12/23/08: 12 News at 4pm-4:30pm
12/26/08: 12 News at 4pm-4:30pm

Tags: fight sma, mondial assistance, spinal muscular atrophy

Doing some online shopping this holiday season? Give to the fight against Spinal Muscular Atrophy while you shop by using GoodShop, a new feature of Yahoo’s GoodSearch. Just select “Fight SMA - Andrew’s Buddies” as your charity and while you buy gifts for your family and friends, a percentage of your purchase will come back to Fight SMA.

Tags: fundraiser, spinal muscular atrophy