Cure SMA

We’re excited to introduce Cure SMA’s new advocacy update video series! We hope this monthly series will help you learn more about ways you can take action and make a difference for the SMA community. Links included below💜🧡 Cure SMA Advocacy Page: https://lnkd.in/gUWrXGxN Cure SMA Advocacy Action Center: https://lnkd.in/exBsrJfh Cure SMA Advocacy Blog: https://lnkd.in/e-4uceM4

Registration is open for the 2026 Annual SMA Research & Clinical Care Meeting, to be held June 24th through June 26th at Disney’s Boardwalk Inn Hotel in Orlando, FL. For more information and to stay up to date on conference details, please visit our Research & Clinical Care Meeting website.   REGISTER TODAY: https://lnkd.in/ehwx-DG5   Abstract Submission is Open! Abstract submission for the 2026 Annual SMA Research & Clinical Care Meeting is open. We ask that all abstract submissions for talks be on new and unpublished data.   This year, we encourage abstracts that spotlight key topics, including: •  Dual Treatment or Combination Therapy (biological evidence in support of/against to clinical observation/experience)   •  Scoliosis and Orthopedic Interventions •  Neurocognition and brain structure/function   •  Rehabilitation Recommendations: (examples may include: bracing, novel equipment, and school accommodations) •  Manifestations of disease   While the above are proposed topics of focus, we welcome abstract submissions on any topic related to SMA. The deadline for abstract submission is Friday, March 6th. Notification of acceptance will occur on or before Friday, April 3rd.   Click Here to Submit an Abstract ➱ https://lnkd.in/eePdB_nM   If you have questions regarding the 2026 Annual SMA Research & Clinical Care Meeting or abstract submission, please email SMARCC@curesma.org.   We hope you will join us in Orlando!

Did you know that Cure SMA has a dedicated website with insurance-related tools for individuals with SMA and healthcare providers? Our Insurance Resources webpage includes: - The updated Health Insurance Roadmap - State Specific Resource Guides - Checklists for Letters of Medical Necessity and Insurance Appeals - Payer Outreach Resource Letters We encourage you to take a moment to explore these tools and share them with anyone who may find them beneficial. Click here to access these resources. https://buff.ly/gKHa9Iq

#SMAClinicians, do you have patients that are interested in learning more about SMA clinical trials? The SMA Registry and Clinical Trial Finder may be used to explore studies that align with each patients' needs and preferences. Visit https://lnkd.in/gzkiE48j

A quick year-end reminder: Due to recent USPS postmark changes, mailed donations may not be postmarked for many days after being dropped off, which could affect your 2025 tax deduction. To ensure your gift is counted this year, we recommend mailing early, requesting a hand-stamped postmark, or making a secure online donation here: https://lnkd.in/eYWJbKET

The Cure SMA Find a Treatment Center Tool is an online resource used by patients and caregivers to locate sites offering SMA treatment and care. Is Your Site Currently Listed & Up To Date? If your center is listed, please review it for accuracy. You can update or remove outdated information. If your center is not included, add your details today!   Why Update or Add Your Site? Connect with individuals and families looking for SMA specialists. Support community access to SMA treatment by ensuring your center’s listing accurately reflects the options available at your site.   Take a few minutes today to review or update your listing by clicking here. https://lnkd.in/gaQJppdV

We’ve moved! If you’re mailing a donation, please use our new address and toss those old envelopes: Cure SMA 50 E Commerce Dr, Suite 90 Schaumburg, IL 60173 Thank you for helping your generosity reach the right place!

Registration is now open for the 2026 Annual SMA Research & Clinical Care Meeting, to be held June 24th through June 26th at Disney's Boardwalk Inn Hotel in Orlando, FL. Bringing together researchers from academia, government, and biotech/pharmaceutical companies with multi-disciplinary healthcare providers who are diagnosing and caring for people with SMA, the Annual Research & Clinical Care Meeting is the largest meeting dedicated to SMA research and care. We look forward to reuniting the community at this 30th annual meeting to learn about the latest advances in research, treatments, and care.   For more information and up to date details, please access our website: https://lnkd.in/dJTQQm8v   Click here to register today: https://lnkd.in/ehwx-DG5   Abstract submission is now open! We ask that all talks be on new and unpublished data. The deadline for abstract submission is Friday, March 6th, 2026. Notification of acceptance will be sent by Friday, April 23rd, 2026.   Click Here to Submit an Abstract: https://lnkd.in/eePdB_nM   If you have any additional questions, please email SMARC@curesma.org

The wait is over. The full video is here! See how individuals and families, advocates, and the SMA community are coming together to bring new treatments, expand support, and drive meaningful change.    From the early days when a diagnosis meant no hope to today, where research, advocacy, and community support are creating real possibilities, this is the story of what we’ve accomplished together and the future we are working to unlock 🧡💜   Watch the full video here: https://lnkd.in/ePzHsNde

Thank you to Congressman TROY A. CARTER, Sr. Louisiana for providing remarks at this weekend's Cure SMA Summit of Strength (New Orleans) and for meeting directly with individuals with spinal muscular atrophy (SMA), their families, and partners.