Thank You for a Wonderful 2019 Annual SMA Conference!

Thank you to everyone who attended the 2019 Annual SMA Conference at the Disneyland in Anaheim, California! It was an impactful weekend of community, research and fun.

We are happy to announce that, including on-site registration, there were over 2,500 attendees in total – our largest conference to date! It was such an honor to have SMA families, clinicians and researchers attend the conference from 37 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 to view some of the fun photos!

Conference Overview

The Conference began on Friday with the Newly Diagnosed Program, Meet & Greet, and Researcher Relay Race. Friday’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. Mickey Mouse, Minnie Mouse, Donald Duck, Daisy Duck, and Wreck It Ralph were also there to meet the attendees!

Family workshops kicked off on Saturday, June 29, along with the Family Friendly Researcher Poster Session and the Family PJ Party & Movie Night. Attendees were able to stop by the Cuddle Corner to snuggle the therapy dogs kindly brought in by Canine Companions, and meet many Disney characters including Buzz Lightyear, Woody and Jessie from Toy Story, as well as Pluto.

On Sunday, families enjoyed more fantastic workshops as well as the Evening in the Park, where all attendees were invited to enjoy the magical Disneyland Park together. The Evening in the Park was generously sponsored by AveXis.

A brand-new Adults with SMA Lounge, sponsored by Biogen, was offered on both Saturday and Sunday as a fun space for adults with SMA to mingle and relax.

Another special addition to this year’s conference was the scholarship for adults with SMA, sponsored by Genentech/Roche, which offered travel stipends for both an adult with SMA and their aide/attendant, as well as up to 3 nights hotel stay. The Dhont Family Foundation also generously provided registration scholarships for adults with SMA as well.

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 11-14, 2020 at Walt Disney World in Orlando, Florida. We hope to see you there!

2nd Annual Clinical Care Meeting

On Thursday, June 27, Cure SMA hosted its second annual SMA Clinical Care Meeting as part of the Annual SMA Conference. The Clinical Care Meeting provided a valuable opportunity to share knowledge and network among the 350 clinical attendees representing 19 countries and 70 different institutions. Attendees also had the opportunity to network with other members of the SMA community, including persons with SMA, families and researchers.

New Clinical Trial Data Released at the 2019 Annual SMA Conference

The SMA Researcher Meeting, held each year as part of the Annual SMA Conference, is the largest international research meeting in the world specifically focused on SMA, with over 700 attendees in 2019. 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:

Stay tuned for a full recap in an upcoming news post!

Thank You

The Annual SMA Conference would not be possible without the assistance of our fantastic volunteers. From setting up decor, working in the Children’s Program, preparing and running games at the Meet & Greet, to any of the other countless jobs, our volunteers were amazing once again.

We extend our thanks to the sponsors and exhibitors who generously supported the 2019 Annual SMA Conference. A special thanks to AveXis, Biogen, and Genentech/Roche for their generosity as the presenting sponsor of this year’s conference.

See you at Walt Disney World in 2020!

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