Cure SMA - Connecticut Chapter

04/06/2026

More treatment progress!

Scholar Rock has resubmitted its Biologics License Application (BLA) to the U.S. Food and Drug Administration for apitegromab, an investigational therapy for spinal muscular atrophy.

Scholar Rock anticipates FDA acceptance of the BLA within 30 days of resubmission and a review period of up to six months from the date of resubmission.

Cure SMA will continue to monitor progress and share updates with the community.

Click the link to read the full update: https://www.curesma.org/scholar-rock-resubmits-biologics-license-application-bla-for-apitegromab-to-the-fda/

03/30/2026

Incredible news for the SMA Community!

Biogen today announced that it has received approval from the U.S. Food and Drug Administration (FDA) for the High Dose regimen of SPINRAZA to treat people living with SMA. With broad label approval for all those living with SMA, this is an excellent result for the SMA community.

This FDA approval marks another important step forward in the ongoing effort to treat and manage SMA. The High Dose regimen of SPINRAZA has the potential to provide additional benefit for those currently receiving treatment, offering new possibilities for improved outcomes and quality of life. Cure SMA is committed to working closely with Biogen, healthcare providers, and the SMA community to support timely education and access to this new dosing option, in alignment with its approved use.

To learn more, please visit: https://www.curesma.org/biogen-receives-fda-approval-of-high-dose-spinraza-for-the-treatment-of-sma/

11/25/2025

Incredible news for the SMA community!

Incredible news for the SMA community! Novartis has received FDA approval for Itvisma® (onasemnogene abeparvovec-brve)—a new SMA treatment option bringing greater independence and new possibilities for individuals living with SMA.

This is a meaningful step forward in our collective mission to address the critical unmet needs of older individuals living with SMA while empowering families with more options for care.

Learn more about this exciting development and what it means for individuals and families impacted by SMA: https://www.curesma.org/novartis-receives-fda-approval-of-itvisma-for-the-treatment-of-sma/

08/02/2025

I have 28 cans free for shipping cost only. My son’s food was changed. Message me if you need it!

02/12/2025

Please sign and share widely with your friends, family, etc!

Cure SMA is advocating for additional federal funding for Spinal Muscular Atrophy research and we need your help! It only takes a minute or two to fill out the form below. You will first click your state, check that you are from that state at the bottom, and add in your information. We would greatly appreciate if you could share widely with your networks🧡💜

You can sign on here:https://www.curesma.org/wp-content/uploads/2025/01/Cure-SMA-SMA-Research-Signon-Letter-State-Links.pdf

12/02/2024

Don't miss out on our 25% off Cyber Monday deal + 4 FREE promo items for all orders over $50!

All orders over $50 today will automatically receive a FREE 40th Anniversary Keychain, Adhesive Cell Phone Wallet, a Square Sticker Pack AND a Cure SMA Cookie Cutter ($34 value) while supplies last! Also receive 25% off your entire order with discount code "CYBERMONDAY" at checkout

https://buff.ly/4i7hPt8

10/14/2024

08/20/2024

The picnic is just a few days away and we're getting really excited to see everyone!
Here's a suggested packing list (obviously you don't need to bring EVERYTHING. These are just some ideas):
Hydration (for yourself)
Sustenance (to share)
Beach towels
Bathing suits
Swim gear
Sand toys
Sunscreen
Beach umbrella
Kite, bubbles, other fun stuff
A change of clothes

05/19/2024

In case anyone is wondering.. there will not be a Walk n Roll this year… Full transparency… I reached out a few times to get it organized and never heard back.

02/28/2024

Prayers for MJ Purk whom many of us know… she gained her wings tonight! 🙏

02/15/2024

SAVE THE DATE: CT Cure SMA picnic is 8/24 at Camp Harkness in Pavilion 1! More information to come!

11/27/2023

Stock up on your favorite Cure SMA Swag in time for the holidays with this Cyber Monday deal!

This Cyber Monday, you can get great deals on all Cure SMA swag!

Orders over $50 will automatically receive a FREE Cure SMA custom die cut birch ornament, a Square Sticker Pack, AND a Cure SMA Cookie Cutter ($33 value) while supplies last! 💜🧡

Receive 25% off your entire order with discount code "CYBERMONDAY" at checkout.

https://curesmaorg.myshopify.com