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$2,697
by 5 supporters
$0 goal
DARE Step Challenge
Help Raise $15,000 towards Gene Therapy research for Refsum Disease
Team Member
John DeMarco
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Team Members
John
$2,697
5 supporters
Kristie
$6,747
42 supporters
Susan
$2,139
9 supporters
Kate
$525
5 supporters
Sára
$175
3 supporters
Marlena
$50
1 supporter
Kathryn
$39
1 supporter
Event
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Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. DARE stands for Defeat Adult Refsum Everywhere. We DARE to believe there is a cure for Adult Refsum Disease.
Adult Refsum disease is a genetic disorder that impacts the metabolism of phytanic acid which is found in food. The disease significantly impact quality of life of patients by causing vision loss, hearing loss, loss of smell, mobility issues and more. People with Refsum Disease must also go on a very strict diet to slow progression of current symptoms and avoid life threatening symptoms. A better therapy is needed!
As seen in Global DARE Foundation's recent webinar, Refsum disease is a strong candidate for Gene Therapy. We are running this fundraiser to raise the necessary funds to start the pre-clinical work for Gene Therapy.
Please support us in our mission to find a cure!
