Cure SMA would like to thank everyone who attended the recent 2021 Virtual SMA Conference and 2021 Virtual SMA Research & Clinical Care Meeting. It was an impactful week of workshops, networking, and SMA community engagement.
This year’s virtual conference week—the second virtual conference during these pandemic times—hosted nearly 2,500 registrants from over 65 countries. Cure SMA offered more than 50 sessions, including the SMA Research & Clinical Care Meeting, that received almost 7,800 live household views, a number which has now grown to over 9,500 total household views since the event ended two weeks ago. Although we were unable to come together in-person, it was such an honor to have individuals with SMA, their families, clinicians, and researchers virtually attend our events from around the world.
If you couldn’t tune in for the live events of the Virtual SMA Conference, we’ve got you covered! Many of our sessions were recorded and will be made available to view on Cure SMA’s YouTube channel in the coming weeks. Check out the latest on the “2021 Virtual SMA Conference” playlist.
If you attended any of the sessions last week, and have not done so already, we would be grateful if you would share your feedback through our conference survey here. This survey will close at 11:59 p.m. on Friday, July 30th. On Monday, August 2nd, we will randomly select one survey winner to receive up to four (4) complimentary registration fees for the 2022 Annual SMA Conference in Anaheim, CA.
The 2022 Annual SMA Conference dates have been officially announced! Next year, we will gather from Thursday, June 16th to Sunday, June 19th, 2022, at the Disneyland Hotel in Anaheim, California. We hope to see you there!
The 2021 Virtual SMA Conference kicked off on Monday, June 7th with the Opening Session and Newly Diagnosed Virtual Session. That evening, we hosted three of our 13 social events offered throughout the week – the Newly Diagnosed Mingle, Grandparents Networking Social, and Adults with SMA Trivia Night. This set the stage for a week of education and engagement.
Family workshops kicked off on Tuesday, June 8th and ran through Friday, June 11th, covering topics such as Reproductive Options for SMA Families, Sleep Problems in SMA, Mental Health and SMA, Optimizing Telehealth, and much more!
We also hosted an array of additional socials throughout the week, including Mom’s Night In, Dads’ Night In, Teens with SMA Trivia Night, Adults with SMA Evening Social, Kids & Teens Talk It Outs, and a Newborn Screening Social. These special events provided opportunities for attendees to gather in a friendly online setting to socialize with their peers.
The 2021 Virtual SMA Conference concluded with an SMA Community Conference Closing Social, which brought together the whole SMA community—individuals with SMA, families, researchers, and healthcare providers—to celebrate the culmination of a valuable week of education and connection. We had almost 100 attendees celebrate the week’s success.
Clinical Care CME Session
On Wednesday, June 9th, Cure SMA hosted a one-day Clinical Care Session as part of the 2021 Virtual SMA Research & Clinical Care Meeting. The goals of the session were to provide a valuable opportunity for SMA healthcare providers across disciplines to share knowledge, facilitate collaborative discussions between healthcare providers to achieve improved care for SMA, foster clinical care research collaboration across all care centers, and promote interactions between new clinicians and leaders in clinical care for SMA. The meeting featured special sessions on “Ethics in SMA Clinical Care” and “Mental Health Challenges in SMA-Affected Patients and Families.” Focused speaker panels presented on musculoskeletal care, impact of new therapies, and newborn screening. The Clinical Care CME Session offered continuing education credits for its 617 attendees.
New Clinical Trial Data Released at the 2021 Virtual Researcher Meeting
The SMA Researcher Meeting consisted of the Special Session and Basic Research Session on Thursday, June 10th, and the Clinical Drug Development Virtual Session on Friday, June 11th. The goal of this meeting 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.
This year’s Special Session was entitled, “Rehabilitation and Regenerative Therapies/Technologies.” Understanding why and how motor neurons degenerate within the context of low levels of SMN protein and how developmental factors influence this degeneration is critical for better understanding the pathology of SMA. Furthermore, understanding degeneration may led to potential therapies aimed at preventing or halting this degeneration and give insight into therapies aimed at regeneration. The goal of this session was to explore what is known about degeneration and regeneration within the context of neuromuscular diseases and discuss how this knowledge may impact future therapeutic development. Speakers included: Joe Lewcock, PhD, Michael Coleman, PhD, Richard Robitaille, PhD, and Ahmet Hoke, MD, PhD.
At this year’s virtual 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:
- Scholar Rock Presents TOPAZ Phase 2 Data Showing the Transformative Potential of Apitegromab in Patients with Type 2 and 3 SMA https://www.curesma.org/scholar-rock-topaz-data-for-apitegromab-researcher-meeting-2021/
- New Genentech Data for Evrysdi Show Improved Motor Function in Pre-Symptomatic Babies After One Year and Confirm Safety Profile in Previously Treated People with SMA https://www.curesma.org/genentech-data-for-evrysdi-researcher-meeting-2021/
- Biogen Presents New Spinraza Data at the 2021 Virtual SMA Conference https://www.curesma.org/biogen-presents-new-spinraza-data-at-the-2021-virtual-sma-conference/
This year’s Virtual SMA Conference and Virtual SMA Research and Clinical Care Meeting would not be possible without the support from our outstanding conference speakers, whose dedication helped to make this online event a success.
We would also like to thank our National Presenting Sponsors for the 2021 Virtual SMA Conference and Virtual SMA Research & Clinical Care Meeting: Biogen, Genentech, and Novartis Gene Therapies. Additional recognition goes out Platinum Sponsors, Cytokinetics and Scholar Rock, Gold Sponsor, Accredo, and Silver Sponsor, Orsini Specialty Pharmacy, for their support.