Thank you to everyone who attended the 2022 Annual SMA Conference at the Disneyland Hotel in Anaheim, California! It was an impactful weekend of opportunities to connect, learn, and have fun!
We are happy to announce that, including on-site registration, there were over 2,100 attendees in total, which was a record for the Annual SMA Conference! It was an honor to have individuals with SMA, their families and care teams, clinicians, and researchers attend the conference from nearly 30 countries across the globe.
The Conference began on Thursday, June 16th with the Newly Diagnosed Program, Newborn Screening Meet & Mingle, Meet & Greet, and Researcher & Clinician Relay Race. Thursday’s activities follow a wonderful tradition at the Annual SMA Conference in which new attendees are welcomed and—along with returning adults with SMA, families, clinicians, and researchers—are given the opportunity to come together in a fun, relaxed setting before the start of conference workshops. Mickey & Minnie Mouse, Tiana, Lilo & Stitch, and Winnie the Pooh & Tigger were also there to meet the attendees!
Family workshops kicked off on Friday, June 17th along with the Family Friendly Researcher Poster Session and the PJ Party & Movie Night. Attendees were able to stop by the Cuddle Corner to snuggle the 17 therapy dogs, and meet many Disney characters including Pluto, Up’s Carl & Russell, Mike Wazowski & Sully, and Woody & Buzz Lightyear!
On Saturday, families enjoyed more fantastic workshops as well as the Evening in the Park, where all attendees were invited to enjoy the magical Disneyland Theme Park together.
The Adults with SMA Lounge was offered on Thursday, Friday, and Saturday as a fun space for adults with SMA to mingle and relax.
Other special opportunities for attendees to connect included Thursday’s Dad’s Night Out and Friday’s Grandparents Coffee & Mingle, Adults with SMA Reception, Teen Social, and Mom’s Night Out.
The closing session of the conference was called, ‘It’s a Wonderful Life.’ A panel of adults with SMA took the stage to answer questions about their experiences, and shared messages of perseverance, joy, hardships, and growth. The dates and location for next year’s Annual SMA Conference were also announced; it will take place from Thursday, June 29th – Sunday, July 2nd, 2023, at Walt Disney World’s Yacht & Beach Club Resort in Orlando, Florida. We hope to see you there!
5th Annual Clinical Care Meeting
Cure SMA hosted our 5th Annual Clinical Care Session of the Annual SMA Research & Clinical Care Meeting on Wednesday, July 15th. Our goals were to share knowledge among health care professionals from a variety of disciplines to improve care for SMA and promote collaboration and discussion between new and experienced clinicians. This year’s meeting included special sessions on Ethics in SMA, and an international update on Newborn Screening Implementation from Australia, Italy, and New York state. Our afternoon focused on nutrition, including a panel reviewing nutrition across the lifespan. The Clinical Care Session provided continuing education credits for all who attended. This was our first in-person Research and Clinical Care Meeting since 2019 with an attendance of over 450 people!
36th Annual Cure SMA Research & Clinical Care Meeting
Cure SMA recently hosted the annual SMA Research & Clinical Care Meeting on June 15-17 in Anaheim, California. The Research and Clinical Care Meeting provided a valuable opportunity to share knowledge and network among the more than 450 researchers and health care providers in attendance. The meeting also furthered research by building productive collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior researchers. These attendees represented more than 20 countries and over 100 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 Presented at the Research & Clinical Care Meeting
At this year’s meeting, 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:
- RESPOND, DEVOTE, and ASCEND Clinical Trials from Biogen
- SPRINT Clinical Trial in Infants with 2 copies of SMN2 and the SPRINT Clinical Trial in Infants with 3 copies of SMN2 from Novartis Gene Therapies
- RAINBOWFISH and FIREFISH clinical trials from Genentech
- TOPAZ clinical trial from Scholar Rock
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 many other volunteer tasks, our volunteers were amazing once again.
We extend our thanks to the sponsors and exhibitors who generously supported the 2022 Annual SMA Conference. A special thanks to Biogen, Genentech, and Novartis Gene Therapies for their generosity as the presenting sponsors of this year’s conference.
See you at Walt Disney World in 2023!