08/26/2022
Our son Eli turns 8 this July 31st and as you know, we were inspired to start the Stand By Eli Foundation five years ago when Eli was diagnosed with an ultra rare neurodegenerative condition – so rare it didn’t have a name, only call ed the name of the gene it affects – IRF2BPL. Eli was the13th patient diagnosed worldwide in 2016. To date we have connected with over 70 families affected by an IRF2BPL disorder worldwide. Our outreach with Stand By Eli was limited. The response, however, was overwhelming. At first glance Stand By Eli might make it seem like the funds and research were meant just to help Eli; we want to make sure there is no question that this is an all inclusive foundation to fund research for all children affected, and that’s why we are transitioning the name of the foundation to the iDREAM For a Cure Foundation. Five years after its launch, the Stand By Eli Foundation has 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. The incredible work of our research teams is costly. Since our start, we have been grateful to raise a little over $900,000 and have personally put in an additional $190k into the organization in 2020 to keep critical research going as the pandemic stopped all fund raising. Our foundation has paid out over $800,000 in the last 5 years for research, and we look forward to expanding IRF2BPL research around the globe. The coming years will be an exciting chapter for our foundation as we will open up grant applications for researchers to compete for a financial grant. Our medical advisory board will work together to determine the winner of the iDREAM For a Cure Research Grant. We are determined to expand research on IRF2BPL and to find a cure for our kids within the coming years.
