Thank you to everyone who attended the 2018 Annual SMA Conference at the Hilton Anatole Hotel in Dallas, Texas! It was an impactful weekend of community, research and fun.
While the final numbers are still being counted, we are happy to announce that, including on-site registration, there were around 1,600 attendees in total – our largest Midwestern conference to date! It was such an honor to have SMA families, clinicians and researchers attend the conference from 30 countries across the globe.
For those who were not able to attend, check out our Facebook page to watch the Opening General Session, a few of the Family Friendly Poster Session presenters, and the Researcher Q&A.
Also available to view are photos from Day 1 and Day 2 of the Annual SMA Conference.
The Conference began on Thursday with the Newly Diagnosed Program, Meet & Greet, and Researcher Relay Race. Thursday’s activities follow a wonderful tradition at the Annual SMA Conference in which new families are welcomed, and along with returning families, clinicians, and researchers are given the opportunity to join together in a fun, relaxed setting before the start of conference workshops.
Family workshops kicked off on Friday, June 15, along with the Family Friendly Researcher Poster Session and the Family & Researcher Dance Party.
On Saturday, families enjoyed more workshops, including “Top Tips on Traveling Around the World” presented by Cure SMA Committee Member, Srin Madipalli, in addition to the Researcher Q&A, PJ Party & Movie Night, and Roll-a-Palooza sponsored by Adyn’s Dream.
Lastly, the conference concluded with the special session, It’s a Wonderful Life. A panel of SMA adults took the stage to answer questions from the audience about their experiences, and shared encouraging messages of perseverance, joy, hardships and growth. Also announced were the dates and location for next year’s Annual SMA Conference, which will take place from June 28—July 1, at Disneyland in Anaheim, CA. We hope to see you there!
Inaugural Clinical Care Meeting
The inaugural SMA Clinical Care Meeting took place on Saturday, June 16th, during the Annual SMA Conference. Clinicians across the country were invited to share and discuss experiences, successes and ideas in order to better optimize care for individuals affected by SMA.
We thank Biogen, AveXis and Genentech for generously sponsoring the SMA Clinical Care Meeting.
New Clinical Trial Data Released at the 2018 Annual SMA Conference
The SMA Researcher Meeting, held each year as part of the Annual SMA Conference, is the largest research meeting in the world specifically focused on SMA. The goal is to create open communication of scientific data, accelerating the pace of research. The meeting also furthers research by building productive collaborations – including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior researchers.
At this year’s conference, several companies released new data from their programs. The data released covers the entire SMA population – from infants to adults – and includes different therapeutic approaches, including those that target the underlying genetic cause of SMA and those that work on the muscles affected by SMA.
Clinical trial updates included:
- Cytokinetics Phase 2 clinical trial data of reldesemtiv (CK-2127101)
- PTC Therapeutics announces risdiplam (RG7916) is well tolerated at all dose levels
- Biogen data from its SPINRAZA clinical development program
The Annual SMA Conference would not be possible without the assistance of our fantastic volunteers. Whether setting up decor, working in the Children’s Program, preparing and running games at the Meet & Greet, moving boxes, or any of the other countless jobs, our volunteers were once again amazing.
We extend our thanks to the sponsors and exhibitors who generously supported the 2018 Annual SMA Conference. A special thanks to Biogen for their generosity as the presenting sponsor of this year’s conference.
See you at Disneyland in 2019!