Thanks to previous votes, the Gwendolyn Strong Foundation (GSF) won $25,000 for Spinal Muscular Atrophy (SMA) research in the Chase Community Giving campaign on Facebook. Now, for only one week from January 15th to January 22nd, SMA has an opportunity to win much, much more!

The charity that receives the most votes will win the top prize of $1 Million and five runners-up will get $100,000 each. GSF has pledge to give 100% to SMA awareness and research deemed most promising by the SMA community. Within 90 days after winning the Chase Community Giving prize, GSF will execute a unique online voting campaign and distribute all funds to the winning programs recommended by prominent and committed SMA scientists and voted most important by the SMA community. You can only vote for the Gwendolyn Strong Foundation once, so in order for SMA to have a chance at this critical funding, we need you to not only vote on Facebook, but get your friends and family involved as well. Go to http://VoteForSMA.com to vote and to learn more.

Tags: fundraising, Gwendolyn Strong, research, spinal muscular atrophy

Attention SMA Families, Kids and Friends!

We want to share your story - starring YOU! FightSMA has a special campaign in early 2010 and we need your help. Send us videos of your family and children breaking barriers: from doing the unexpected (playing floor hockey, skiing, etc), to sharing a cool story about your family, to giving advice to other families, helping them make their lives just a little easier. In 2010, it’s all about you.

We’ll be picking our favorite videos to be showcased and to receive an extra cool prize. More details to come soon!

Please send your video submissions via email or hard copy, along with the patient’s name, age, SMA type, and a fun fact. Here’s how:

Electronically
carolinegibson@fightsma.com
Send us a link to the YouTube or other video hosting site, or via a filesharing website like YouSendIt

Hard Copy
From Our Family To Yours
Attn: Caroline Gibson
FightSMA
1807 Libbie Avenue, Suite 104
Richmond, VA 23226

Questions? Feel free to call or email Caroline anytime. 804-515-0080 or carolinegibson@fightsma.com.

By submitting a video for this campaign, you authorize FightSMA/Andrew’s Buddies to use the submitted footage in its original or edited form in any media. You also certify that to the best of your knowledge, all materials used in your video are your own or are materials for which you have obtained any necessary permissions. You further acknowledge that you submit the video freely and without expectation of compensation for any uses made of the submitted footage.

Tags: families, fightsma, living with SMA, sma, spinal muscular atrophy, video

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.

Tags: fight sma, fightsma, fundraiser, Martha Slay, Richmond, spinal muscular atrophy

This week, Fight SMA sent packets to 30 medical supply companies across the Central Virginia area.  The effort, called “The Thumb Drive”, hopes to raise money for spinal muscular atrophy research.  The below video was included in the packet, and was loaded onto a flash memory storage drive, aka a “thumb drive”.

To join the Thumb Drive, please donate using this card (pdf), or by clicking here.

Tags: fundraising, sma, spinal muscular atrophy, thumb drive

The 2009 Fight SMA Annual Conference featured a number of firsts, including the first-ever webcast of the event.  Now, the video from that webcast is available for online viewing and download!  You can watch it on the Conference 2009 page here at Fight SMA.  Just follow this link:

Fight SMA Annual Conference 2009

Tags: conference 2009, sma, spinal muscular atrophy

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

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

We were alerted today about a video on YouTube about a remarkable young man. George Cornelius is a University of Southern California film student, and according to his friends and professors he is producing outstanding work. He also happens to have SMA. The story in the video below was produced by the PBS program Across Indiana.

Tags: sma videos, spinal muscular atrophy

Bill and Victoria Strong, the couple behind the Petition to Cure SMA, posted a video on the Fight SMA Facebook Group.  It’s so good it just had to be shared here as well.  If you haven’t joined the Facebook group, head on over and network with us!  If you haven’t signed the petition, please make your voice heard!

Tags: petition to cure sma, spinal muscular atrophy

A big thanks to Rozie McClay for posting the long version of the Invisible Heroes video in the “submit your news” section of the KOMO-TV website.  Here’s a link to see it yourself.  We encourage you to spread our videos anywhere you find an appropriate place!

Tags: sma videos, spinal muscular atrophy