Thank you to everyone who attended the 2023 Annual SMA Conference at Disney’s Yacht & Beach Club in Orlando, Florida! 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 3,200 attendees in total - 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 over 45 countries across the globe.
For those who were not able to attend, check out our Facebook page to view some of the fun photos and watch recordings of the Opening General Session, Fundraising Power Hour workshop, It’s a Wonderful Life panel, and more!
Overview of the 2023 Annual SMA Conference
The conference began on Thursday, June 29, with the largest Newly Diagnosed Program to date, the Meet & Greet, and the Researcher & Clinician Relay Race. These activities follow a wonderful tradition 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, Anna, Elsa, & Olaf, Mirabel, and Ralph & Vanellope were also there to meet everyone and bring an extra bit of Disney magic! Attendees closed out the evening at the Double Take Fashion Show – a special event which aimed to increase visibility, break down stereotypes and champion adaptive fashion.
Workshops kicked off on Friday, June 30. 63 workshops were offered throughout the weekend – the most we have ever had – covering valuable subjects including Traveling with SMA, Parenting with SMA, Therapeutic Yoga, Aquatic Physical Therapy, and so many more new topics! The new SMA Community Self-Expression Art Exhibit which displayed beautiful art pieces created by members of the community, Community Connection Space, and Activity Room which set up a Mickey ear bedazzling station also opened for attendees to enjoy. The day concluded with the Family Friendly Researcher Poster Session and the PJ Party & Movie Night, where attendees were able to meet many Disney characters including Mr. & Mrs. Incredible, Edna Mode, Woody & Bo Peep, Lotso, and Mike & Sully!
On Saturday, July 1, attendees enjoyed more fantastic workshops as well as the Evening in the Park, where all conference participants were invited to enjoy the magical EPCOT theme park together.
The Adults with SMA Lounge was offered on Thursday, Friday, and Saturday as a friendly space for adults with SMA to mingle and relax.
The Teen Lounge, a new addition this year, was offered on Friday and Saturday as a fun opportunity for teens to connect and play games.
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.
In the closing session, 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 6 – Sunday, June 9, 2024, at the JW Marriott Austin in Austin, Texas. We hope to see you there!
2023 Annual Cure SMA Research & Clinical Care Meeting
Cure SMA recently hosted the 2023 Annual SMA Research & Clinical Care Meeting from June 28-30 in Orlando, Florida. The Annual Research & Clinical Care Meeting provided a valuable opportunity to share knowledge and network among the more than 565 researchers and health care providers in attendance. The meeting also furthered research and care by building productive collaborations—including cross-disciplinary dialogue, partnerships, and the integration of new researchers, health care professionals, and drug companies. Attendees also had the opportunity to network with other members of the SMA community, including persons with SMA, families and caregivers through joint events such as the Meet and Greet and Family Friendly Researcher Poster Session.
The research sessions of the meeting included: the Basic Research Session on Wednesday, June 28th, held concurrently with the Clinical Care Session, the Clinical Research Session on Thursday, June 29th, and the Clinical Drug Development Session on Friday, June 30th. The Special Session of the meeting entitled, “The State of SMA – Towards Improved Therapeutics and Care” was an opportunity for researchers and clinicians to engage in a discussion aimed at better understanding the current population of individuals living with SMA and exploring how what is being seen in clinical care informs further basic research questions.
The Clinical Care Session featured special sessions on multidisciplinary care coordination for individuals with SMA, the importance of reducing the time between diagnosis and start of treatment, and orthopedic complications including scoliosis and hip issues. The session also focused on what the SMA community has learned in the past year related to adults with SMA, dual treatments, and newborn screening.
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 a wide range of the 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:
- Interim results from the RESPOND clinical trial from Biogen
- Data from the ongoing FIREFISH clinical trial from Genentech
- TOPAZ clinical trial data from Scholar Rock
Thank You & See You Next Year!
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 2023 Annual SMA Conference. A special thanks to Biogen and Genentech for their generosity as the Presenting Sponsors of this year’s conference.
See you in Austin, Texas in 2024!
