In less than two weeks, FightSMA will be returning to Washington, D.C. to host the 2010 FightSMA Annual Conference: The Good Fight. This meeting provides a unique setting for researchers investigating spinal muscular atrophy (SMA) and related conditions to discuss their work openly and chart a path forward. The Good Fight also brings together SMA patients, families, friends, and caregivers to learn about research being conducted around the world and to hear from health care professionals in fields important to the day-to-day lives of SMA patients.

The economy, illness, and other hardships can make travel difficult, or even impossible, for some. This is why FightSMA is pleased to once again offer SMA families, friends, doctors, and caregivers a way to access some of the content remotely. The Science Update by Dr. Chris Lorson (April 26th at 5:00PM EST) and the Thriving with SMA panel (April 26th at 6:30PM EST) will be available by live webcast. This access is offered for free by FightSMA and its conference sponsors. There is no limit to the number of viewers, and so, we ask you to share this information with other families affected by SMA and with your health care providers who would like to learn more about the disease.

For those who want to simply view the video, just visit the FightSMA Website. Anyone who would like to access the chat feature to ask questions will need to create an account on UStream, the video streaming service being used for the webcast. We recommend that viewers create their accounts and open the viewing webpage ahead of time to ensure that none of the presentations are missed.

We are very excited about our conference and anticipate an encouraging and very informative time together. We hope that you will attend and encourage your friends and health care providers to join us as well.

Tags: chris lorson, conference 2010, FightSMA Annual Conference, research, spinal muscular atrophy, Thriving with SMA, webcast

If I had my way, there’d be a swimming pool in everybody’s backyard. - Dr. Bob Leshner, M.D.

In this preview of the new FightSMA / Metro Productions sponsored webisodes, “Fighting Back,” FightSMA President Martha Slay interviews Dr. Alex Mackenzie (Children’s Hospital of Eastern Ontario) and Dr. Robert Leshner (Children’s National Medical Center), asking a few questions that are on the minds of spinal muscular atrophy (SMA) parents everywhere.

Click the above video to watch the interview, and keep logging on to FightSMA.org for more interviews, video content, and more!

Thank you to Metro Productions, our partners in this fight, for their generous gifts of time and expertise in the pro bono production of these videos.

Tags: Alex MacKenzie, Bob Leshner, diagnosis, exercise, Martha Slay, spinal muscular atrophy, video

Dr. Mary Schorth is widely known and respected by those in the spinal muscular atrophy (SMA) community. She is a Pediatric Pulmonologist at the University of Wisconsin’s American Family Children’s Hospital and is the Director of the Pediatric Pulmonary Center Training Grant. Building strong bonds with families around the country, she has been instrumental in the development and advancement of respiratory care for children with spinal muscular atrophy. According to Dr. Schroth, “if they get good respiratory care early on, they will live a long life.”

American Family Children’s Hospital recently profiled Dr. Schroth’s work with Sophia Doebbert, one of her patients with type 1 SMA. Sophia’s parents credit Dr. Schroth with providing them with the hope and the tools to care for their daughter, who is now eight years old. Click here to view the video.

In addition to treating SMA patients, Dr. Schroth has managed clinical trials, participated in the “Thriving with SMA” panel at the FightSMA Annual Conference, and contributed to the development of the Consensus Statement for Standard of Care in Spinal Muscular Atrophy. She also developed a pediatric multidisciplinary clinic for patients with neuromuscular disease, incorporating pediatric rehabilitation medicine and pediatric orthopedic surgery.

Tags: FightSMA Annual Conference, Mary Schroth, SMA Type 1, Thriving with SMA

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, 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: fightsma, fundraiser, Martha Slay, spinal muscular atrophy, Virginia

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, spinal muscular atrophy, video

The 2009 FightSMA 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 FightSMA. Just follow this link: FightSMA Annual Conference 2009

Tags: conference 2009, FightSMA Annual Conference, spinal muscular atrophy, Thriving with SMA, video, webcast

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, fightsma, FightSMA Annual Conference, spinal muscular atrophy, Thriving with SMA, video

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: fightsma, Martha Slay, mondial assistance, spinal muscular atrophy