The 2010 FightSMA Annual Conference, entitled “The Good Fight,” opened in yesterday, April 25th, at the L’Enfant Plaza Hotel in Washington, D.C with an international collection of researchers gathering to discuss spinal muscular atrophy (SMA) and related sciences. FightSMA’s Science Director, Dr. Chris Lorson, started off the meeting with a brief introduction before attendees heard from Dr. Kathy Swoboda from the University of Utah, Dr. Rashmi Kothary from Ottawa Health Research Institute, Dr. Livio Pellizzoni from the Columbia University Center for Motor Neuron Biology and Disease, and Dr. Allison Ebert University of Wisconsin-Madison. After dinner, Dr. Charlotte Sumner of the Johns Hopkins University School of Medicine, Dr. Barrington Burnett of National Institute of Neurological Disorders and Stroke, and Dr. Michael Sendtner from the University of Wurzburg (Germany). Topics of the evening included SMA clinical trials, mouse models, and iPS cells.

The researchers’ portion of the conference resumes today with additional presentations and discussions wrapping up shortly before the families and friends portion opens at 5:00PM with an introduction by FightSMA’s president, Martha Slay, and a Science Update by Dr. Lorson. This and the “Thriving with SMA” panel will be available by webcast, free of charge, for families and caregivers unable to attend the conference in person.

Tags: Allison Ebert, Charlotte Sumner, chris lorson, conference 2010, FightSMA Annual Conference, Kathy Swoboda, Livio Pellizzoni, Martha Slay, Michael Sendtner, Rashmi Kothary, researchers, spinal muscular atrophy, Thriving with SMA, webcast

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

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

FightSMA is proud to announce the dates of the 2010 Annual Conference: The Good Fight. The Researchers Conference will be held April 25-26 and will gather select researchers and scientists in an intimate setting to discuss the most recent research and clinical trials through presentations and open dialogue. The Families and Friends Conference will be held April 26-28 and will include a lay-friendly science briefing with Q&A, “Thriving with SMA” panel discussion, one-on-one consultations with panelists, and visits to Capitol Hill.

More information will be posted as it is available on the conference’s webpage: www.fightsma.org/index.php?annual_meeting_2010. For more information about past FightSMA conferences or about spinal muscular atrophy (SMA), visit www.FightSMA.org.

Tags: conference 2010, fightsma, FightSMA Annual Conference, spinal muscular atrophy, Thriving with SMA

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

The 2009 version of “The Good Fight”, FightSMA’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, FightSMA 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: Alex MacKenzie, conference 2009, FightSMA Annual Conference, Genzyme, Kathy Swoboda, Mary Schroth, PTC Therapeutics, SMA treatment acceleration act, spinal muscular atrophy, Thriving with SMA, U.S. House of Representatives, 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: conference 2009, FightSMA Annual Conference, spinal muscular atrophy, Thriving with SMA, webcast