Cure SMA would like to thank everyone who attended last week’s 2020 Virtual SMA Conference! It was an impactful week of online workshops, networking, and community.
We are happy to announce that there were more than 6,600 participants who attended the 28 offered live events. Although we were unable to come together in-person, it was such an honor to have SMA families, clinicians, and researchers virtually attend the conference from 77 countries across the globe.
If you weren’t able to tune in for the live events, we’ve got you! Recordings of 16 online sessions are now available to view on our YouTube channel.
Also, the 2021 Annual SMA Conference dates have been officially announced! Next year we will gather from Thursday, June 10th to Sunday, June 13th, 2020 at the JW Marriott Austin in Austin, Texas. We hope to see you there!
The Virtual SMA Conference kicked off on Monday, June 8th with the Opening Session, Clinical Care & Research Update, and a Newly Diagnosed Virtual Session. This set the stage for a week of education and engagement. That evening, we hosted a “virtual mingle” where SMA grandparents were invited to network and chat online.
Family workshops kicked off on Tuesday, June 9th and ran through Friday, June 12th, covering topics such as Aquatic Therapy, Women’s Health in SMA, Education, Medical Management of Adults, Breathing Basics, and much more. Many of these sessions will be made temporarily available online in late June 2020.
We also hosted Adults with SMA Socials at Home and an Adults with SMA Lounge Night. These evening events were an opportunity for adults with SMA to gather online in a friendly setting. These events were generously sponsored by Biogen.
The conference concluded with the special celebration, where all members of the SMA community were invited to share messages of unity on their social channels. In an enthusiastic display of our community’s strength, more than 5,000 people liked and shared Cure SMA’s content or posted their own messages to show how we’re all “United, At Home.” Additionally, a special message from actors James Wolk and Elizabeth Lail—who are filming a new NBC pilot where they portray parents of a child with SMA—received nearly 25,000 views across our channels.
Clinical Care CME Session
On Wednesday, June 10th, Cure SMA hosted its Clinical Care CME Session as part of the SMA Research & Clinical Care Meeting. The Clinical Care CME Session provided a valuable opportunity to share knowledge and earn continuing education credits for 423 clinical attendees. The goals of the session were to share updates on innovations in clinical care and the impact of new therapies. This session also emphasizes the value and importance of multidisciplinary care teams in SMA care and creates meaningful dialogue between care providers across the globe.
New Clinical Trial Data Released at the 2020 Virtual Researcher Meeting
The SMA Researcher Meeting consisted of the Basic and Clinical Research Virtual Session on Thursday, June 11th and the Clinical Drug Development Virtual Session on Friday, June 12th. 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 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:
- Biogen Shares Results from Landmark NURTURE Study of Pre-Symptomatic SMA Patients Treated with Spinraza
- Genentech Announces 2-Year Risdiplam Data from SUNFISH and New Data from JEWELFISH in Infants, Children and Adults with SMA
- Zolgensma® Data Shows Rapid, Significant, Clinically Meaningful Benefit in SMA, Including Prolonged Event-free Survival, Motor Milestone Achievement and Durability, Now Up to 5 Years Post-dosing
- Scholar Rock Presents Clinical and Preclinical Data for SRK-015 at the 2020 Virtual Cure SMA Research and Clinical Care Meeting
This year’s Virtual SMA Conference would not be possible without the support from our outstanding conference speakers, whose dedication helped to make this unprecedented online event a success.
Thank you to the National Presenting Sponsors for the 2020 Virtual SMA Conference and Virtual SMA Research & Clinical Care Meeting: AveXis, Biogen, and Genentech. We would also like to recognize Visionary Sponsor, Ionis, Platinum Sponsor, Scholar Rock, and Silver Sponsors, Accredo and Permobil, for their support.