Research is the key to helping Eli and other patients like him. To date, the only support we have is through the Undiagnosed Diseases Network (UDN) at Harvard. The UDN and National Institutes of Health (NIH) are funding limited research on decoding the gene and learning its function in the body. Very little is known about this gene, how it works, where in the body it functions and why it may be the cause of all these symptoms. Our challenge is to find answers. Without our funding, the research will end here. We have agreements with Texas Children’s Hospital and Nationwide Children’s Hospital to find answers fast! By having two labs and research teams working together, we are more likely to find a treatment, solution, and possibly a cure. We are counting on the potential of both cutting-edge gene therapy and pharmaceutical intervention.
Texas Children’s Hospital is world renowned for its research on neurological disorders and has some of the world’s finest scientists working on neurological research for disorders such as cerebral palsy, epilepsy, Autism, Rett’s syndrome, MS and many others. The research aims to find disease mechanisms to enable the development of new and improved treatments.
Nationwide Children’s Hospital performs cutting edge gene therapy treatment for several neurological and muscular diseases. They are currently conducting clinical trials with great success for SMA, Batten’s Disease, Congenital Myasthenic Syndromes, Duchenne Muscular Dystrophy, and several others. They have had success in stopping progression and/or reversing symptoms of these diseases. They are very optimistic that they will find a treatment for Eli and IRF2BPL related diseases.
Both Texas Children’s Hospital and Nationwide Children’s hospitals are going through great efforts to find answers. They are very optimistic that they will find a treatment, and hopefully a cure for Eli. This research may also shine a light on other neurodegenerative disease like Alzheimer’s and ALS to name a few. The possibilities are endless.
We can only do this with your support and generous donations.
How you can help.
To fund these 2 research projects, we need to raise $900,000 for the first phase of research at both institutes. The second phase of the research will involve testing gene therapy and is expected to cost anywhere from $3 to $5 million dollars.
Eli is 4 years old, and the average age of onset of the neurodegenerative symptoms is between 5 and 6 years of age. Eli desperately needs your donation and generosity now. Please help Eli by contributing to the STAND BY ELI Foundation today! You have the power to save him and other kids who are born with this disease. Will you Stand By Eli?
