News & Media
The iDREAM For A Cure Foundation was previously known as The Stand By Eli Foundation (both projects of The Giving Back Fund). In 2022 Stand By Eli transitioned to iDREAM For A Cure as the number of families affected by this debilitating disease increased.
Five years after its launch, the Stand By Eli Foundation made a global impact in ways we never imagined. We have secured collaborations with research institutions in Israel, Germany, Poland, Japan and several additional labs in the United States, where researchers are openly sharing data and cell samples to expedite the research process to rapidly find a treatment or cure! iDREAM For a Cure will continue to fund impactful research at Nationwide Children’s Hospital (NCH), where they have determined that clinical trials for ALS and Parkinsonism show hope for IRF2BPL to delay the progression of the disease. Gene therapy continues to be studied at NCH as well, as they work to perfect the amount of protein that is expressed (too much or too little protein can lead to death in the cells). Our team at Texas Children’s Hospital has also been successful pinpointing what goes wrong within the cells of IRF2BPL patients which allows us to narrow down our search for drugs and therapies to help cure the disease. All in all, our research is going VERY well and we remain VERY hopeful!
While the foundation’s name has changed to reflect its scale, reach and growth, our core focus of funding research remains the same. Our new name defines who we are and what we do.
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