Christopher Finlan, the author who used his debut novel “Not a Fire Exit” to raise funds and awareness of spinal muscular atrophy (SMA), is preparing a new project focused on families affected by the disease. With the support of Milverstead Publishing, he is asking families to share their personal stories and experiences with SMA to create a paperback book “for people to read for generations to come.” In addition, profits from sale of the book will be distributed to SMA organizations.
Our friends at Stop SMA in Mississippi are preparing for their fundraiser, Laugh Away SMA, to be held at the end of this week, August 6 at 7:30PM. The event will bring two nationally known comics, Ralph Harris and Henry Cho, to Jackson, Mississippi and funds raised will support research for a cure for spinal muscular atrophy (SMA). Jeff Horton and his daughter Evie, the reason the Hortons started Stop SMA, appeared on their local NBC news to tell the community about the event and the disease. Check out the video below.
For more information about the event and how to buy tickets, visit the Laugh Away SMA website.
On Saturday, July 10, Desiree’s Buddies, FightSMA’s New Mexico chapter, held it’s first annual bowling tournament. The fund raised will help support FightSMA’s mission to strategically accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), including FightSMA’s recently launched gene therapy fundraising initiative “Realizing the Dream“.
Thank you to everyone who came out to bowl and to support Desiree’s Buddies.
Last year, the Nyhuis family and their friends, family, and community organized their first lemonade stand to raise funds to support FightSMA’s mission to strategically accelerate research toward treatment and cure for spinal muscular atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death. Calling their group “Tatum’s Team,” after the young girl diagnosed with type 3 SMA, they raised $250.
On June 5th, they were at it again, holding another lemonade stand. This year they’re efforts were rewarded 500% as they raised $1,500 from supporters in their Virginia neighborhood and across the country who want to join the fight to end this disease.
Thank you to all the members of Tatum’s Team for your fantastic work!
Thank you to everyone who came out for 4th Annual Rubber Duck Race, organized by Patrick’s Buddies/FightSMA New Jersey, Sunday, May 23, 2010 in Westfield, New Jersey’s Mindowaskin Park. The crowds turned out for an awesome race and helped raise funds to support the search for a treatment and cure for Spinal Muscular Atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death.
Special thanks to the members of the Rutgers Scarlet Knights football team who showed their support for the fight against SMA and to the volunteers who made the event possible.
Pictured above: Patrick with Eric LaGrande and Mohammed Sanu
from the Rutgers Scarlet Knights
In February of 2009, Jonay Hipkins lost her 14 month old daughter Jordyn to type 1 spinal muscular atrophy (SMA), the most severe form of the neurodegenerative disease that kills more babies than any other genetic disease.
Last month, Jonay’s co-workers helped her honor Jordyn and all the other victims of the disease with a simple fundraiser. The entire staff of Mclaren Family Care in Grand Blanc, Michigan purchased FightSMA t-shirts and then made a donation of at least $5.00 to wear the shirt and jeans to work. In addition to raising $250 for SMA research, the staff also raised awareness of the disease. Thank you to the staff of Mclaren Family Care for joining the fight to end SMA!
Plans are already in the work to repeat the event later in the summer.
Friends old and new gathered on November 21, 2009 at Richmond’s newest waterfront restaurant, the Boathouse at Rocketts Landing, for the 2009 FightSMA Fall Party to celebrate and help raise awareness and critical research dollars for spinal muscular atrophy.
Guests at the party enjoyed live music by local Richmond favorite, DJ Williams Projekt, while sipping cocktails and enjoying Boathouse specialty hors d’oeuvres. When they weren’t on the dance floor, guests were able to bid on a robust variety of silent auction packages provided by:
Plus1Tickets
By Invitation Only
DowntownShortPump.com
Lemaire
Roan boutique
Heist jewelry
MacLaren Jewelers
real life studios
Hayes & Fisk: The Art of Photography
Appliance Solutions
Visual Arts Center of Richmond
The Boathouse at Rocketts Landing and Shockoe Bottom’s Frame Nation provided gift certificates for the raffle.
When guests at the Fall Party wanted to let their hair down, they grabbed their friends and climbed into the on-site photo booth provided by Virginia Photo Booths and More to create a memorable keepsake to take home from the party. One guest said, “the photo booth was such a cute touch and so nice that it was customized with the event info.”
FightSMA President and Co-Founder, Martha Slay, briefly addressed the crowd to thank them for their support, update them on the progress being made, and encourage them the continue their efforts. A portion of her speech can be heard in the video recap of the event.
It was a fantastic and fun evening, and most importantly, for a wonderful cause: to help fight spinal muscular atrophy. Another attendee declared, “lovely evening, gracious hosts, beautiful people, a gorgeous setting and a great cause. The perfect evening. You have done it again!”
Still photography provided by Sam Perry Photography.
Michael Jay Paskin and Steve Taylor don’t appear to know each other, but from opposite sides of the country, both are using their physical strength to fight a deadly disease that robs its victims of their strength - spinal muscular atrophy (SMA).
Paskin is training to complete the Ironman Arizona triathlon which consists of a 2.4 mile swim, a 112 mile bike, and a 26.2 mile run. He started TriathlonForACure.com to document his training, but also to raise awareness of SMA and funds for the Gwendolyn Strong Foundation. Paskin says that his goal “is to parallel the hard work and determination it takes to complete each triathlon with the hard work and determination it will take to eliminate SMA.” To read more about Michael Paskin’s efforts, click here.
Last month, Taylor completed a 50-mile “ultra marathon” in Washington, DC. The police officer from New Bedford, MA ran in honor of his friends’ 22-month old son Owen who has SMA. Taylor said, “I was thinking of Owen and that drove me not to quit.” Through this race, Taylor was able to raise $3,000 in donations for Owen’s family and he plans to run an even longer race in Owen’s honor next year. To read more about Officer Taylor’s run, click here.
Saturday, September 26, 2009 was a spectacular night in Toronto and an even greater success for FightSMA’s Canadian chapter Tori’s Buddies.
A Casino Royale theme transformed the Fermenting Room at Toronto’s Historic Distillery District. It was a great room, and the company even better. A heartfelt thank you to all of the 300 supporters who attended the 10th annual FightSMA Canada Gala. It was a “full house” ultimately “betting” that we will one day “hit the jackpot” and find a cure for Spinal Muscular Atrophy (SMA). We know that thanks to these supporters, we are raising awareness and the needed funds for the research that will get us to that goal. Because of the generous donors, we have surpassed a very impressive $175,000 so far, and we are still counting. Many thanks to our lead Sponsor CML Healthcare and our other sponsors Wilson Truck Lines, Paramount Pallet,TD Securities and PWC. We hope to see you all again next year.
The pictures are fabulous and all the fun can be viewed at www.hadaball.com. Just click on “Events,” then select “SMA Gala.”
A heartfelt “Thank You!” from Tracy, Shawn and the FightSMA Board of Directors.
Earlier this year, the community of Mechanicsville, Virginia came together to celebrate nine successful years of raising funds for the fight against spinal muscular atrophy (SMA), led by the hard work and determination of Carice Smith. After getting over the initial shock of her son Andrew being diagnosed with SMA, Carice has said that she knew she had to take a pro-active stand. This stand took the form of the “Strike Out SMA Bowlathon” which was held annually, missing only one year due to illness. For the 10th year, family and friends decided to throw a party to honor the work of Carice, Andrew, and all their supporters - and to raise money to support SMA research.
Check out the slideshow of pictures from the party below, and to see the list of generous corporate sponsors and learn more background information about the event, click here.
Christopher Finlan, the author who used his debut novel “Not a Fire Exit” to raise funds and awareness of spinal muscular atrophy (SMA), is preparing a new project focused on families affected by the disease. With the support of Milverstead Publishing, he is asking families to share their personal stories and experiences with SMA to create a paperback book “for people to read for generations to come.” In addition, profits from sale of the book will be distributed to SMA organizations.
Last month, Jonay’s co-workers helped her honor Jordyn and all the other victims of the disease with a simple fundraiser. The entire staff of Mclaren Family Care in Grand Blanc, Michigan purchased 
Many thanks to our lead Sponsor 
