Team Kristie all the way now and always! Go GIRL!!!!!!! You inspire me to be better.
Refsum Gene Therapy Fundraiser
Help Raise $15,000 towards Gene Therapy research for Refsum Disease
Member
Total
Donate / Tix
John
$175 / 2 donors
Donate / Tix
Kristie
$2,301 / 34 donors
Donate / Tix
Susan
$1,450 / 6 donors
Donate / Tix
Kate
$275 / 1 donor
Donate / Tix
Marlena
$50 / 1 donor
Donate / Tix
Kathryn
$39 / 1 donor
Donate / Tix
Sára
$0 / 0 donors
Event
John's Story
Story
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!
Supporters
$50
$64
$39
$39
$39
$39
$75
$50
$39
$673
$39
