In Support of Marley's Miracle
Marley Mansour is a beautiful 13-year-old diagnosed with NARS1, an ultra-rare genetic condition. For the first time, there is real hope.
Through the groundbreaking work of n-Lorem Foundation, Marley has the opportunity to receive a personalized, individualized treatment designed to stop the progression of her disease—and possibly even heal. She will be the first person in the world with NARS1 to receive this treatment, paving the way for other children and families.
While the medicine itself will be provided at no cost, the two-year treatment journey comes with significant expenses—including travel, testing, and specialized care—many of which are not covered by insurance.
Marley hopes to begin treatment in 2027, and we are asking our community to come alongside us in this life-changing journey.
You can support Marley by:
• Giving through the Support Registry
• Sharing her story
• Following updates at @MarleyTheRare
• Giving through the Support Registry
• Sharing her story
• Following updates at @MarleyTheRare
Updates
Keep up to date as needs change.
Aug 11, 2026
NARS1 Family & Researcher Gathering
Sometimes there are people. Sometimes there is community. Sometimes...
Jul 16, 2026
Another Step Forward for Marley 💜
We received some encouraging news this week about Marley's personal...
Jun 26, 2026
What the World Cup brought Marley
I didn’t think we’d have a World Cup story, but here we are.Dallas ...
- Created Feb 05, 2025
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Support Page
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Words of Support
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Cory Pope 3 days ago • with donation
Juscrazy 4 months ago • on 'What the World Cup brought Marley' update
Anonymous 4 months ago • with donation
Sonia Flores 6 months ago • with donation
Jason Van Haselen 7 months ago • with donation
John Hargrove 7 months ago • with donation