A Call for Early Diagnosis, Genetic Therapies, and Global Equity in Care
Spinal Muscular Atrophy (SMA) is one of the most severe genetic causes of infant mortality, yet early diagnosis and modern therapies can transform outcomes.
Join the ICNA Advocacy Committee as we shine a spotlight on Spinal Muscular Atrophy—a condition that challenges families, healthcare systems, and policy frameworks across the globe. This advocacy initiative brings together experts, young neurologists, and changemakers to promote awareness, accelerate early detection, and strengthen systems of care for children affected by SMA.
Why This Matters
SMA is a life-limiting neuromuscular disease with devastating consequences when left untreated. Yet the tools for hope already exist: newborn screening, genetic therapies, and multidisciplinary care models. The gap lies in access, awareness, and policy.
Let’s bridge that gap—together.
Join the Movement: Advocate for Children with SMA
Health professionals, junior doctors, students, and caregivers are all vital voices in the SMA advocacy ecosystem.
We invite you to take part in our campaign:
✅ Watch the webinar on ICNAPedia
✅ Take the advocacy pledge
✅ Share your local story or clinical insight
✅ Create an educational blog or resource on SMA
✅ Encourage newborn screening initiatives in your region
Thank You for Joining the SMA Advocacy Webinar
We extend our deepest gratitude to all speakers, panelists, and participants who joined the ICNA Advocacy Webinar on SMA (held on 10 September 2025).
Your presence and contributions reflect a shared commitment to improving outcomes for children with SMA through education, equity, and early action.
Special thanks to:
Dr. Tawfeg Ben-Omran (Keynote Speaker)
Dr. Chahnez Charfi Triki
Dr. Ann Mathew
Dr. Ramesh Konanki
Dr. Juliana Gurgel
FLICNA Representative: Hadi Helali
Certificates of Appreciation
All webinar participants will receive an e-certificate of appreciation.
If you haven’t received yours or have questions, please contact:
Dr. Chahnez Charfi Triki
Chair, ICNA Advocacy Committee
📧 chahnezct@gmail.com
How Will You Advocate for SMA?
📍 Raise awareness in your clinic or school
📝 Share a blog or case on ICNAPedia
📊 Promote early screening and diagnostics
👨⚕️ Support young professionals in neuromuscular care
📜 Champion policy reform in your region
Let’s pledge together:
“I advocate for children with SMA to receive early, equitable, and effective care.”
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