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.

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!

Update to posting “Driving to cure spinal muscular atrophy“:

Newspapers and press outlets across the country have picked up on the story of the Strong’s journey. Even the Associate Press ran an article. Check out some of the news pieces by visiting The Gwendolyn Strong Foundation press page

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:

On Saturday, May 16th, a group of children in Virginia held a lemonade stand to raise money for the fight against spinal muscular atrophy (SMA). The group rallied around their friend and neighbor Tatum who was diagnosed with SMA type 3 just over a year ago.

By selling lemonade, baked goods, and snacks, these young people were able to collect $250 for FightSMA to support SMA research and were also able to inform their neighbors about this crippling disease.

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.

Participants in a recent fundraiser in Cranston, Rhode Island fought against spinal muscular atrophy with golf clubs, and a big supporter from the U.S. Congress helped them.

Fight SMA’s Rhode Island chapter, Corinna’s Angels, organized the 5th Annual Swing Against SMA Golf Tournament. In attendance was Rhode Island Congressman Patrick Kennedy (pictured to the right with the Calise family - click the picture to see a larger version), who is a supporter of not only Fight SMA but is also a key sponsor of the SMA Treatment Acceleration Act.

“When Congressman Kennedy learned that he had a chance to champion our bill to help find a treatment or cure for SMA, and to help our children who fight this disease daily, Congressman Kennedy stepped up and accepted the invitation,” said tournament organizer Michelle Calise. “With continued support from our families and through the hard work and dedication of Congressman Kennedy, we look forward to the SMA Treatment Acceleration Act becoming law by the end of 2008, and granting us the funds we need to bring this deadly disease to its knees.”

We thank Congressman Kennedy for his participation in the event, and for his continued support!

Please help us and all of the SMA Community represented by Miracle for Madison, Families of SMA, Peyton’s Pals, SMA Angels, SMA Support, MDA and The SMA Foundation continue to build support for the SMA Treatment Acceleration Act. A list of our current sponsors is posted here. For more information on how you can personally become involved in the fight to defeat Spinal Muscular Atrophy and open doors for other neurodegenerative diseases like ALS (Lou Gehrig’s Disease), Alzheimer’s Disease and Parkinson’s Disease, please contact Caroline Gibson, Fight SMA Public Affairs Coordinator, by using our contact form.