In Support of Marley's Miracle
Support Registry
Browse all the options to help, in one place.
Marley Mansour is a beautiful 12-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.
Mar 19, 2026
Miles for Marley’s Miracle
This week Marley has been in Chicago for medical appointments, but ...
Mar 01, 2026
Rare Disease Day 2026: A Moment of Recognition, A Community of Support
This Rare Disease Day felt especially meaningful for our family.Rec...
Nov 01, 2025
Setup Begins Tomorrow! 💪
What a fun delivery day! 🎉Signage is up at Acacia Collective, and I...
- Created Feb 05, 2025
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- Report Support Registry
Support Registry
Browse all the options to help, in one place.
Words of Support
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