Cure SMA

Cure SMA Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA). Visit cureSMA.org
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The 2026 Annual SMA Conference booklet is now posted! The booklet includes information on workshops, special events, and...
06/01/2026

The 2026 Annual SMA Conference booklet is now posted! The booklet includes information on workshops, special events, and many more important details of the Annual SMA Conference.

If you have not yet registered for conference, you will be able to register onsite. Please email [email protected] with the full name(s) and age(s) of the attendee(s) so we can be sure to accommodate you and set you up to register onsite and more information on booking your hotel room.

We look forward to seeing you in Orlando!

https://www.curesma.org/wp-content/uploads/2026/05/2026_Main-Conference-Booklet_vFnl-web.pdf

💜WEEKLY SPOTLIGHT🧡This week, we are spotlighting 15 year old Ivan Isaiah: “My son Ivan Isaiah was Bborn November 3,201. ...
05/29/2026

💜WEEKLY SPOTLIGHT🧡

This week, we are spotlighting 15 year old Ivan Isaiah:

“My son Ivan Isaiah was Bborn November 3,201. He is 15 year old has SMA Type 1, on a ventilator and GJtube fed. He is very alert, talkative and loves to mimic his favorite songs. He’s a very smart guy. He also loves to communicate with his eyes: yes for blinking and no for closing them. Isaiah is very a tough little guy who has been through a lot of surgeries and is still beating the odds. Isaiah enjoys his van rides, driving around the city listening to music.”

If you or someone you know has SMA, use the link below to submit your story 💜🧡

https://survey.alchemer.com/s3/8686091/SMA-Stories-Advocacy-Draft?fbclid=PAVERFWASGvVFleHRuA2FlbQIxMABzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAaebgD3bKwufDDfuYDO891IM0tgNuWru4ktyzaEURyS4nxBExLmS1lJWY_k4qA_aem_suAbc2QZ8tyoz-rPgLJ9GA

Medicaid home care is crucial to those living with spinal muscular atrophy. It allows them to have independence that wou...
05/27/2026

Medicaid home care is crucial to those living with spinal muscular atrophy. It allows them to have independence that wouldn’t be possible otherwise.

If Medicaid home care has played a role in your life, we would love to hear your story! You can comment below, send us a DM or fill out the Power of Stories survey below

https://survey.alchemer.com/s3/8686091/SMA-Stories-Advocacy-Draft?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAdGRleASEL2xleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAafEw4g4ZDNuv4KKEtLDfwfazT60LgyAzCbTKqB2uwYHmsUDnWSkonAtVJWTlw_aem_VpmbT3B3g8mbIkCDVWkaDQ

Clinical trials play a vital role in advancing new treatments for SMA. If you’re curious about how trials work or what p...
05/27/2026

Clinical trials play a vital role in advancing new treatments for SMA. If you’re curious about how trials work or what participation might look like for you or your family, Cure SMA offers a clear, easy‑to‑understand overview.

Learn more: https://www.curesma.org/cure-sma-clinical-trials/

Meet Doctor Emma Sutton, a postdoctoral neuroscience researcher and a Cure SMA grant recipient. Her work focuses on a re...
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

Seven years ago today, the FDA approved Zolgensma®, a treatment for spinal muscular atrophy 💜🧡
05/24/2026

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

Cure SMA is pleased to announce the publication of the 5th annual State of SMA report. The 2025 State of SMA report pres...
05/22/2026

Cure SMA is pleased to announce the publication of the 5th annual State of SMA report. The 2025 State of SMA report presents a snapshot of the quickly changing landscape of SMA. Take a look at the data to learn more and use the link below for the full report.

https://www.curesma.org/2025-state-of-sma-report/

“Meet Louie, a resilient 10-year-old living with SMA Type 2. We participate in the Walk-n-Roll events for him and those ...
05/20/2026

“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/

“ Hi! I want to introduce you to Ruby and Landon. Ruby is about to finish her first year of high school and Landon is ab...
05/19/2026

“ Hi! I want to introduce you to Ruby and Landon. Ruby is about to finish her first year of high school and Landon is about to finish his first year of middle school. They are both creative, determined, kind, and happy kids, who were also both diagnosed with SMA in 2013. At the time, there were no treatments available for SMA. Our family, like everyone does in this amazing community, did whatever we could to support them and the challenges they faced.

Since 2017, they’ve received two of the FDA-approved treatments currently available. Our family is beyond grateful that Ruby and Landon have been so positively affected by the treatments, and we have so much hope and excitement thinking of all the opportunities that lie ahead for them!”

- Dany, Ruby and Landon’s Mom

Funding for treatment is crucial to those with SMA, and we can’t do it without you. Use the link below to make a donation that will go towards treatment that benefits Ruby, Landon and everyone living with SMA 💜🧡

https://donate-curesma.donordrive.com/events/900/donate?utm_id=97760_v0_s00_e0_tv3&fbclid=PAVERFWAR5oJVleHRuA2FlbQIxMABzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAad3JbZcRAinaMia1gahuV3JJvFCwIf1ngKPPcPVEJ4PwMih7PwdJsOFCR565Q_aem_eHSLTijxH3UTdHQK7GDV4w

Address

50 E Commerce Drive, Suite 90
Schaumburg, IL
60173

Opening Hours

Monday 8am - 5pm
Tuesday 8am - 5pm
Wednesday 8am - 5pm
Thursday 8am - 5pm
Friday 8am - 5pm

Telephone

+18008861762

Website

https://linktr.ee/curesma

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