Your Donation Matters
Your donations are vital to support the innovative research that will change lives. NUS1 families are currently treating one symptom at a time, with no understanding of the long term decline or affect of their children. Your contribution funds the NUS1 Foundation for research in a race for groundbreaking science.
Research
Active research with world class genetic centers for collaboration and innovations
Education
Building comprehensive networks to disseminate the education amongst speciality care providers
Care
Working to build community and engagement to connect families and increase support networks
"I really believe we can change the world of our loved ones!"
Lien Crombe
Mother of 5 year old NUS1child Belgium, EU
Where are Your Donations Going Today?
100% of NUS1 Funding is currently going to research two viable treatment options for NUS1, AAV9 gene therapy and a Drug Repurposing Study
NUS1 Treatments are ready to be researched but we need your help! NUS1 Foundation is the only organization raising money for the research and treatment of NUS1 Genetic Disorders. Our fundraisers are currently financing two main studies, AAV9 gene therapy at Horae Gene Therapy Center at UMASS(Estimated cost Phase 1 $113,000) and a Drug Repurposing Study at Greenwood Genetic Center and the University of Georgia(Estimated Cost $40,000). To learn more about our treatment research partners please click the links below.
More Ways to Donate
BONFIRE
FUNDRAISERS
TEAM T-SHIRTS
Does your childs or loved one need some team support that helps advance their care?
A creative initiative of our Foundation is to work on a new design for your loved one's TEAM!
GET STARTED on a Fundraiser for your NUS1 Warrior.
SOARING
BRIGHT
TEAM CHLOE
SOARING BRIGHT #2 is a NUS1 Foundation T-shirts that depicts the adventurous and beautiful flight that NUS1 individuals take on. Like butterflies migration, the expedition expands on resourcefulness and highlights the radiant wings of individual beauty.
TEAM OLIVER + MYRON
SPACE TRAVELER EXTRAORDINAIRE #1 ~ the first in an edition of NUS1 Foundation T-shirts that depict the adventurous trailblazers that NUS1 individuals become. Like space travel, our expedition expands on untouched areas of science.