SMA Researchers Talk About the Importance of the Spinal Muscular Atrophy Research Group Meeting

Originally published on August 12, 2014.

The SMA research group meeting, held each year as part of our Annual SMA Conference, is an anticipated event in the SMA research community. This meeting has a tangible impact on achieving our mission of a world without SMA.

Over the last decade, we’ve seen many advances in SMA research, from new techniques in gene therapy to drugs that show promise in slowing or stopping the progress of the disease. With such great promise in the research landscape, we know that no single group can develop a treatment for SMA alone—it requires collaboration between academics, industry, government, and families. From the start, Cure SMA has been working to bring all of those groups together, and the research group meeting is one of the primary ways we accomplish this goal.

At the research group meeting, the largest of its kind in the world, researchers share unpublished scientific data, accelerating the pace of research.  The meeting also creates a sense of community among SMA researchers, encouraging collaboration and long-standing research partnerships.  Moreover, it allows young researchers to meet and learn from leaders in the field, helping to build the next generation of the SMA research community.

“At the SMA Research Group Meeting, there is the opportunity for one-on-one interactions with those at all levels of scientific training from junior to senior investigators.  Here researchers are free to ask multiple questions, get advice and help with proposals, and obtain reagents or suggestions on how to perform a technique.”
-Arthur Burghes, PhD, Cure SMA Scientific Advisory Board member and Professor at OSU. 

The meeting is also the main forum in the SMA scientific community for integrating new researchers and drug companies as efficiently as possible.

“I first attended the meeting in 2010, shortly after joining Isis Pharmaceutical and starting to work on their ISIS SMN-Rx drug development program. That meeting was invaluable for myself and the other Isis attendees, as it was where we held our first advisory meeting for the program and made initial connections with advisors, collaborators, foundation members, and potential clinical investigators, which has set the stage for many of our activities since then.”
-Kathie Bishop, PhD, Vice President of Clinical Development at Isis Pharmaceuticals

Finally, and most importantly, the conference motivates SMA researchers by allowing direct interactions with families and patients living with SMA, through events like our Meet and Greet, Family Friendly Poster Research Session, and various panel discussions. These are unique and special experiences for all involved.

“This meeting is the best of its kind. The value of meeting with researchers, physicians and parents all in one place is immeasurable.  Parents see how much we care, physicians see how much work is required for drug development, and researchers see how much their hard work is appreciated.”

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