Greater Florida Chapter - Cure SMA

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/

12/02/2025

Today is ! We’re still accepting donations at https://walk-curesma.donordrive.com/GreaterFlorida if you are able to give. Thank you for supporting our chapter’s fundraising efforts and for your continued support!

11/26/2025

This Thanksgiving, we’re grateful for YOU. 💜🧡

These snapshots from the 2025 Greater Florida Walk-N-Roll capture the spirit, joy, and community we share. Thank you for being part of it!

A special thank you to C. Hall Photography for capturing these beautiful moments.

View the full gallery by China Hall Photography here: https://challphotography.zenfolio.com/p196820658/h47a8f942

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/

11/09/2025

Thank you to everyone who was part of the 2025 Greater Florida Walk-N-Roll! Whether you attended the event or donated to support it - and whether you are an old friend or a new one - we appreciate you so much! We’ll be posting more pictures and videos soon, so stay tuned.

And, there’s still time to give if you haven’t already! 🔗 https://walk-curesma.donordrive.com/GreaterFlorida

Together we will cure SMA!

11/09/2025

Live from the Greater Florida Walk-N-Roll!

11/09/2025

These incredible items will be up for grabs at tomorrow’s Opportunity Drawing! Come to the Greater Florida Walk-N-Roll at Eckerd College for your chance to snag one! Registration opens at 10 a.m.!

11/08/2025

The leaderboard for tomorrow’s Greater Florida Walk-N-Roll is MOVING & GROOVING! Here are our top 5 fundraising teams as of this post:

🥇 Team Joey Strong – $1,595
🥈 Andy’s Army – $1,204.70
🥉 Allison Wonderland – $909.14
🏅 Triton Tracks – $735
🏅 Nigel’s Ninjas – $575

🎉 Huge cheers to our other amazing teams:

Lyndon’s Pride • E.R.K. Strong • SMA Support Squad • Nomishomies • Brooks Wolfe Pack • God’s Warriors for Malakhai • Rodney’s Team • We Are One

We’re already more than halfway to our fundraising goal – and we need YOUR help to reach the finish line! Every dollar makes a difference for families affected by SMA.

☀️ Rain or shine, we’ll see you on Sunday, November 9, at Eckerd College in St. Petersburg!

🕙 Registration opens at 10 a.m.

🫧 The Spheres Bubble Show starts at 10:30 a.m.

📲 Register or donate now: walk-curesma.donordrive.com/GreaterFlorida

11/08/2025

Thank you to The Gabber Newspaper for helping us spread the word about the Greater Florida Walk-N-Roll!

11/08/2025

We’re so proud of Allison Kerns and Katie Hoog Kerns for representing us on Bay News 9! 🙌 They’re getting ready for the Greater Florida Walk-N-Roll this weekend — and we’d love for you to join the fun. Come out this Sunday and be part of something special!

Cure SMA Walk-N-Roll is set for Sunday at 10 a.m.

11/07/2025

Rain or shine, the 2025 Greater Florida Walk-N-Roll is ON! Join us Sunday, November 9, 2025, at Eckerd College – Fox Hall, 4200 54th Ave S, St. Petersburg, FL 33711.

🕙 10:00 a.m. - Festivities Begin (with your favorite characters, games, and activities!)
🕙 10:30 a.m. - The Spheres Bubble Show Begins
🕦 11:30 a.m. - Opening Ceremony
🕐 11:45 a.m. - Walk & Roll!
🕐 1:00 p.m. - Event Ends

📍 Here’s a map with parking instructions to make your arrival easy. Come ready to celebrate, have fun, and make a difference!

More information here: https://walk-curesma.donordrive.com/GreaterFlorida