Cure SMA - Virginia Chapter

05/27/2026

05/26/2026

Meet Doctor Emma Sutton, a postdoctoral neuroscience researcher and a Cure SMA grant recipient. Her work focuses on a remarkable question, whether treating SMA before birth could give developing babies an even stronger foundation from the very start.

Her work is just beginning, and that is exactly what makes it so important. Focused on understanding whether treatment delivered during pregnancy can safely support healthy development from the very start, this research represents a critical first step toward what could one day become a new approach to treating SMA.

That research is happening right now funded by our CMA community.

We have a $250,000 gap to close by June 30th. Your donation is what helps move us along. Use the link below to make a donation and help Doctor Sutton and others provide lifesaving research.

https://donate-curesma.donordrive.com/events/900/donate?fbclid=PAVERFWASC4xxleHRuA2FlbQIxMABzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAaeunPDgGNM-QhZy9wxJjoXaGjoQ50yHV_WjgQyx-poIHS_OyqNMhojagOSgYQ_aem_9QxieqaWTU20uZQjDOZ0kw&utm_id=97760_v0_s00_e0_tv3

05/24/2026

Seven years ago today, the FDA approved Zolgensma®, a treatment for spinal muscular atrophy 💜🧡

05/21/2026

“Meet Louie, a resilient 10-year-old living with SMA Type 2. We participate in the Walk-n-Roll events for him and those in the SMA community. Since the age of three, he’s been receiving life-changing treatment made possible through the research and funding efforts of CureSMA. Thanks to ongoing support, Cure SMA continues to advance critical research and expand treatment opportunities, bringing hope to Louie and the entire SMA community.”

You can join Louie and his family at the Philadelphia Walk-n-Roll on May 31st. Use the link below to sign up for your local event 💜🧡

https://www.curesma.org/walk-n-roll/

05/14/2026

05/14/2026

We are incredibly honored to share that Bennett’s Village has been nominated for Best of C-ville awards in:

✨ Best Playspace
✨ Best Park
✨ Best Nonprofit

What started as a dream for a more inclusive community has grown because of all of you — the families, supporters, volunteers, advocates, and neighbors who continue to believe in the importance of spaces where everyone belongs.
If Bennett’s Village has touched your life or inspired your family, we would be so grateful for your vote.
Vote here: https://bestof.c-ville.com/2026/

Thank you for helping us continue to build a community rooted in inclusion, connection, and play for all!

[Image description: A photo of the Bennett’s Village treehouse, a large wooden accessible play structure surrounded by trees and greenery under a bright blue sky. The treehouse features wide ramps, railings, and decorative carved panels that create a welcoming and nature inspired space.
In the upper corner, a “Best of Cville 2026” graphic is displayed, while the Bennett’s Village logo appears near the bottom. The image highlights the beauty of the inclusive playspace and celebrates the organization’s nomination for the community awards.]

05/12/2026

Pre-Registration for the 2026 Annual SMA Conference is now closed, but you will be able to register on site!

If you plan on attending and registering onsite, please email [email protected] with the full name(s) and age(s) of the attendee(s) so we can set you up to register onsite and also provide you the link to reserve your discounted hotel room(s).

We look forward to seeing you in Orlando!

https://www.curesma.org/annual-sma-conference/

05/12/2026

Today we celebrate Bennett.

A little boy who loved rocks, nature, adventure, and finding joy in the world around him. A little boy whose life continues to inspire connection, inclusion, and community every single day.

On what would have been Bennett’s birthday, we invite you to honor his memory in simple and meaningful ways.
Find a beautiful rock.
Watch the sunset.
Spend time outside.
Visit the treehouse.
Pause to notice something small and wonderful.

Bennett had a way of helping people slow down and see the beauty around them, and we hope his spirit continues to do the same.

Thank you for helping us carry his joy, wonder, and love for community forward.

Happy Birthday, Bennett.

[Image description: A photo of Bennett smiling warmly while seated in his wheelchair at a table indoors. He has curly brown hair and is wearing a bright blue shirt featuring the character Pikachu. His hands rest happily in front of him, and his joyful expression is the focus of the image.
Overlay text reads “A Life That Still Inspires,” with decorative shapes in soft colors framing the design. The Bennett’s Village logo appears in the upper corner. The overall image feels warm, loving, and reflective, honoring Bennett’s joyful spirit and lasting impact.]

05/07/2026

Positive news for our SMA community!

The FDA has officially accepted Scholar Rock’s application to review apitegromab — an investigational treatment for SMA — with an action date of September 30, 2026.

This means the FDA has determined the application is complete and a full review is now underway. While acceptance doesn’t guarantee approval, it’s an important milestone on the path toward a potential new treatment option.

Cure SMA will be closely monitoring the review process and will keep you informed every step of the way. Read the full update at the link below.

https://www.curesma.org/fda-accepts-scholar-rocks-biologics-license-application-bla-to-review-apitegromab-for-sma/

05/06/2026

The 10th annual Cure SMA community update survey is now available. Completing this survey is one tangible, and relatively simple, way for you to contribute to the SMA community. Whether this is your first time participating, or you have participated in this survey before, your responses help shape how we understand—and respond to—the evolving needs of the SMA community.

Use the link below to complete the survey:

https://www.curesma.org/the-10th-annual-cure-sma-community-update-survey-is-now-available/