2017 Annual SMA Conference Recap

Thank you to everyone who attended the 2017 Annual SMA Conference at Disney’s Contemporary Resort in Orlando, FL; it was truly a magical 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 2,100 attendees in total – our largest conference ever! 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 and a few of the Family Friendly Poster Session presenters. Conference photos will also be available soon. 

Conference Overview

The Conference began on Thursday with the Newly Diagnosed Program for SMA families recently diagnosed. This special session is similar to an orientation that helps introduce new families to the conference.

Thursday evening’s Meet & Greet is a wonderful tradition at the Annual SMA Conference and welcomed new families, returning families, clinicians and researchers. It was a great opportunity for all attendees to join together in a fun and relaxed setting before the start of conference workshops.

The Meet & Greet features 30 interactive games that kids and families are encouraged to rotate around to activities like Bozo Buckets, Treasure Chest, Lollypop Tree and many more. The games were adapted for all children to enjoy and win great prizes. Candy and tattoo stations filled with goodies and fun for all were additional Meet & Greet favorites. There was even an opportunity to get your picture taken with the iconic Disney Characters, Mickey and Minnie Mouse.

The Relay Race is also a highlight of the conference, as both SMA researchers and kids line up to see who can cross the finish line first, with one rule: researchers have to race in a manual wheelchair. Conference attendees stand on the edge of the course cheering on the racers. Children always cross the finish line first, leaving the researchers far behind!

Teen Social and Adults with SMA Reception

Thursday evening’s Teen Social, sponsored by AveXis and the Jacob Isaac Rappoport Foundation, was an invaluable opportunity for SMA teens and siblings to connect with one another and share their experiences.

Similarly, the Adults with SMA social, sponsored by the Dhont Family Foundation, brought SMA adults together in a fun, social environment where cocktails were enjoyed and good times were had by all. A special thanks to the Dhont Family Foundation for providing scholarships to all SMA adults attending the conference.


Friday and Saturday offered families informative workshops and sessions. There were over 50 workshops during the conference, covering the latest information on critical care and support including Yoga Therapy for Adults and Teens with SMA, Healing the Grieving Heart – Part I, Family Readiness for Emergencies, and Writing Our Stories: A Workshop for Parents. Presentations from some of the workshops and sessions offered are available on the Cure SMA website.

Symposiums Sponsored by AveXis and Biogen

Two of the leading companies in SMA research, AveXis and Biogen, sponsored family breakfast and lunch symposiums. This allowed families to ask important questions and connect with the companies in a relaxed and open setting.

Children’s Program

This year’s Children’s Program was extraordinary and another huge success! Thanks to our incredible volunteers, all of the children had a fabulous time. Children stayed busy with countless arts and crafts projects, fun toys, entertainment, movies, video games, build a bear stations, and much more.

Researcher Q & A

The Researcher Q & A Session, held on Saturday afternoon, allowed families to hear directly from SMA researchers about the latest research developments. Leading experts in SMA answered families questions. A video from this informative session will be available on the Cure SMA website in the coming weeks.

It’s a Wonderful Life

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. 

Updates from the Conference

As part of the Annual SMA Conference, we announced the launch of a new grassroots advocacy campaign to implement newborn screening for SMA in all 50 states. Missouri State Representative Becky Ruth, sponsor of Missouri’s first-in-the-nation law instituting newborn screening for SMA, was the featured speaker at the newborn screening symposium, which marked the launch of this campaign. A recording of this symposium, online advocacy tools for connecting with elected officials, and a guide to setting up an SMA Awareness Month advocacy visit will be available in the coming weeks.

An updated SMA drug pipeline was also released during conference. The update includes 19 active programs, including one approved therapy, 14 pharmaceutical partners and 5 programs in clinical trials.

Lastly, at the Sunday morning closing session, we announced the location and dates for our 2018 Annual SMA Conference. Mark your calendars for June 14 – 17, 2018, as we make our way south to the Hilton Anatole Hotel in Dallas, Texas!

Thank You

The Annual SMA Conference would never 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, inflating hundreds of balloons, moving boxes, or any of the other countless jobs, our volunteers got the job done and were absolutely amazing. 

We extend our thanks to the sponsors and exhibitors who generously supported the 2017 conference. A special thanks to Biogen for their generosity as the presenting sponsor of this year’s conference.

See you in Dallas!

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