What's IRF2BPL Disorder?
Children with a mutation on IRF2BPL gene are born healthy. But as early as 2 year old, they begin to display progressive, severe neurodevelopmental regression. They commonly suffer from loss of ability to control their muscles and often develop seizures. In most severe cases, the children become unable to walk, stand, sit, speak or swallow as early as 3-5 years old and bound to a wheelchair and feeding tube.
IRF2BPL/NEDAMSS Rare Disease Awareness
Raising awareness for our daughter's rare genetic mutation disease called IRF2BPL. Hoping for a cure through awareness and research.
IRF2BPL Kid Johnny. Fundraising for Stand by Eli
Our son Johnny as well as approximately 30 other kids are suffering from a rare neurodegnerative disease, irf2bpl related disorder for which no cure exits. The current research is paid for by the Stand by Eli Foundation.
Family Fighting for Research for Son’s Rare Genetic Disorder
Mom Sanam and Dad Ben share about their son Eli’s incredibly rare IRF2BPL diagnosis after noticing he had some developmental delays. With this diagnosis, they learned that their son will lose the ability to walk and talk and he will essentially become a prisoner in his own body. Eli’s pediatric neurologist Dr. Jane Tavyev Asher joins to share about Eli’s condition, one that he shares with only 20 kids in the world.
Legal Charity Status
The iDream For A Cure Foundation is a project of The Giving Back Fund, a 501©(3) non-profit organization with federal tax-exempt status as a public charity, ID 04-3367888.
iDream For A Cure
c/o The Giving Back Fund
5101 Santa Monica Blvd
Ste 8 PMB 137
Los Angeles, CA 90029
Email: Idreamforacure@gmail.com
Phone: 310-649-5222
Fax: 310-649-5070