💜WEEKLY SPOTLIGHT🧡
This week, we are spotlighting Xavi:
“My son Xavi is right now 7 years old. He was diagnosed SMA type 3 since 3 years old. He is such a lovely, socialized kid. He loves to play sports with his friends. Even though his ability might not be 100%, he always find ways to participate. He’ll never give up trying something new even it’s really challenge.”
If you or someone you know has SMA, use the link in our bio to submit your story 💜🧡
The progress we’ve seen in SMA research didn’t happen overnight. Years of investment, discovery and determination brought us to where we are today. Swipe through to see the power of long-term commitment.
The next milestone is already in motion, but we need your help. You can make a donation using the link in our bio and help us continue on this path. These milestones didn’t happen by chance. They happened because the community chose to invest in what was possible 💜🧡
“I’m a mom first, and everything else comes after that. My life revolves around my kids, and especially advocating for my son Knoxley, who has SMA. Our days aren’t always easy, but they’re full of love, strength, and a whole lot of resilience.
Walk-n-Roll means so much to me because it’s more than just an event; it’s a way to raise awareness, build community, and fight for a better future for kids like Knoxley. It gives us a space to celebrate how far they’ve come while also pushing for more research, more support, and more understanding, MORE INCLUSION.
I participate because this is personal. I walk (and roll) for my son, for other families on this journey, and for hope.”
Join Knoxley and his family at the St. Louis Walk-n-Roll, and use the link in our bio to find your local event 💜🧡
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] as soon as possible to let us know.
We look forward to seeing you in Orlando!
Medicaid funded home care plays an essential role in the lives of individuals with spinal muscular atrophy (SMA). Check out our bio for our latest brief discussing how Medicaid funded home care living with SMA to have their independence
Breakthroughs aren’t built in a single moment. They move through stages and your gift is what keeps them moving. Read above to see how research funding actually works.
Cure SMA wouldn’t be able to fund this research without you. We have a $250,000 gap we have to close by June 30th. You can use the link in our bio to make a donation today 💜🧡
🧡WEEKLY SPOTLIGHT💜
This week, we are spotlighting Anderson:
My 7 yr old son has SMA type 3. Anderson is in first grade and doing great. We found out after genetic testing when he was 2 and half, prior to seeing orthos and neuros for trying to find out why he was falling when he walked. He loves video games, swimming and help from his big sis. While he is unable to run, he still keeps up with all his friends at school and has us laughing all day. We are looking forward every day to the new research coming out about new treatments to help Anderson be more active.”
If you or someone you know has SMA, use the link in our bio to submit your story 💜🧡
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 in our bio
Self-directed care and paid family caregiving are essential to independence, health, and work of individuals with spinal muscular atrophy. Read our new brief on why Medicaid home care matters to people with SMA. You can find the brief using the link in our bio 🧡💜
💜WEEKLY SPOTLIGHT🧡
This week, we are highlight Jasmine:
“My name is Jasmine, and I was diagnosed with Spinal Muscular Atrophy at the age of 3. I’m a single mom of two kids, working full-time as a Development and Marketing Manager, and creating content to advocate for accessibility and representation.
I love gardening, art, and cooking—those are the spaces where I feel the most peace and creativity. Life with SMA has taught me how to adapt and redefine what independence looks like.
Right now, I’m embarking on one of my biggest journeys yet: getting my first accessible van that I’ll be driving myself. It’s not just about transportation—it’s about freedom, confidence, and showing my kids that limitations don’t have to define us.
Every day is a mix of challenges and gratitude, but I’m proud of the life I’ve built and excited for what’s next.”
If you or someone you know has SMA, use the link in our bio to submit your story 💜🧡
“We participate in the Walk-n-roll to support Taylor and everyone living with SMA. Cure SMA has changed our lives having helped fund research for decades before Taylor was even born. This allowed Taylor to get treatment soon after her diagnosis. Their continued work to improve laws that impact people living with disabilities, fund ongoing and new research, and support the SMA community is vital.”
Join Taylor and her family at the New England Walk-n-Roll on May 16th and use the link in our bio to register for your local event 💜🧡
We want to send a huge thank you to everyone who showed up to our Arizona Evening of Hope! Together, you all helped raise over $72,000! Additionally, we would like to thank Howard Bell for attending and sharing his story.
We appreciate everyone who showed up, and we can’t wait to see you next year 💜🧡
