Cure SMA - WNY

Cure SMA - WNY Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA). Visit www.cureSMA.org to learn more. We made almost $50,000 that year.

WNY Chapter - Cure SMA

Our first SMArt Walk for a Cure was held in August 2004. We weren’t quite sure exactly what we were doing and how we were going to do it, but we did. We pulled together all of our resources from family, friends, acquaintances and strangers to get food donated and items for a theme basket raffle. The decision was made we would do this every year until a successful Cure is fo

und and no one else would have to experience the pain of their child being diagnosed with SMA. We have also held Pig Roasts, a Comedy Night, Garage Sales, Volleyball Tournaments and even a Car Raffle. We brainstorm all the time trying to think of ways to raise more money … some work and some don’t but we always try and never give up. We raise money for our Warriors: Alex, Jenna, Kale, Jen, Joey, Justin, Kalen, Kyan, Molly, Oscar, McKenna, Matthew, Michaela and Lilly. We remember our Angels: Jake, Barrett, Eric, Meghan, Nicholas, Wyatt, Jordan, Audra and Greta. We do everything we can for those yet to be diagnosed and those who have yet to be. We have held family get-togethers from Halloween and Valentine’s Parties to an Easter Egg Hunt. We have become a family that no one wishes to be a part of yet we are there for each other. To date, we have raised over $650,000. We offer support, guidance, ideas and medical contacts. But most of all, we offer Hope. Together We Will Find A Cure.

More treatment progress!
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/

Incredible news for the SMA Community!
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/

The Brooklyn Summit of Strength is coming up this Saturday, February 14! Have you registered?The Summit of Strength is a...
02/11/2026

The Brooklyn Summit of Strength is coming up this Saturday, February 14! Have you registered?

The Summit of Strength is a great opportunity to get up to speed about the latest advances in treatment, care, advocacy, and support. These half-day meetings will feature presentations by local and national experts.

This is a free program which includes refreshments, lunch, and parking for all attendees.

We look forward to seeing you in Brooklyn! https://summit-curesma.donordrive.com/Brooklyn

Don’t Miss Out! The Cure SMA Brooklyn Summit of Strength Is Almost HereThere’s still time to register for the Brooklyn S...
01/21/2026

Don’t Miss Out! The Cure SMA Brooklyn Summit of Strength Is Almost Here

There’s still time to register for the Brooklyn Summit of Strength happening Saturday, February 14 - a meaningful opportunity to connect and learn with others in the SMA community.

Attendees will hear from local experts and have the opportunity to network with other families and individuals with SMA at this free event, which will also include refreshments and lunch. Registration is still open and will be available on-site!

Cure SMA leads the way to a world without spinal muscular atrophy (SMA), the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide individuals with SMA and their families the support they need for toda...

The Brooklyn Summit of Strength is coming up Saturday, February 14! Have you registered?The Summit of Strength is a grea...
01/05/2026

The Brooklyn Summit of Strength is coming up Saturday, February 14! Have you registered?

The Summit of Strength is a great opportunity to get up to speed about the latest advances in treatment, care, advocacy, and support. These half-day meetings will feature presentations by local and national experts.

This is a free program which includes refreshments, lunch, and parking for all attendees.

We look forward to seeing you in Brooklyn!

Cure SMA leads the way to a world without spinal muscular atrophy (SMA), the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide individuals with SMA and their families the support they need for toda...

Incredible news for the SMA community!
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/

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

The Brooklyn Summit of Strength is coming up next Saturday, February 15! Have you registered?The Summit of Strength is a...
02/07/2025

The Brooklyn Summit of Strength is coming up next Saturday, February 15! Have you registered?
The Summit of Strength is a great opportunity to get up to speed about the latest advances in treatment, care, advocacy, and support. These half-day meetings will feature presentations by local and national experts. This is a free program which includes breakfast, lunch, and parking for all attendees. We look forward to seeing you in Brooklyn! https://summit-curesma.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=780

We hope to see you at the Brooklyn Summit of Strength on Saturday, February 15th, 2025! Participants will be hearing fro...
12/20/2024

We hope to see you at the Brooklyn Summit of Strength on Saturday, February 15th, 2025! Participants will be hearing from local experts and have the opportunity to network with other families and individuals with SMA. Registration is open and will be available on-site. This is a free program which includes breakfast, lunch, and parking for all attendees.
For more information and to register for the summit, please visit the link:

Cure SMA leads the way to a world without spinal muscular atrophy (SMA), the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide individuals with SMA and their families the support they need for toda...

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

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North Tonawanda, NY
14120

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