Harvey was born in March 2020, right at the beginning of the Covid-19 pandemic.  Harvey's parents, Jackie and Adam Foster, were grateful to be taking home their 'healthy' little boy right at the beginning of shut-downs and so much uncertainty.  Unfortunately, Harvey was born with an undetected ultra-rare mutation on his DLG4 gene, that science only recently could detect on very specific tests.  It took Harvey's family almost 18 months to receive his diagnosis after seeing multiple specialists and having countless tests run on Harvey, to help explain why he wasn't learning to crawl, walk, talk, or feed himself, and why he was displaying characteristics of an Autism Spectrum Disorder.   

Although structurally Harvey's brain is completely intact, Harvey has made little progress, because his mutation prevents his body from correctly producing a single protein that is necessary for proper synaptic development in the brain.  Fortunately, science is proving that these rare genetic disorders and forms of Autism, intellectual disability, and many seizure-based disorders are treatable.  Children who have received treatments for Spinal Muscular Atrophy, SPG-50, and now Angelman Syndrome are showing that if we fix the protein deficiencies caused by the mutation, that many symptoms can improve.  Harvey is only one out of two individuals identified in the world with his specific mutation on DLG4.  In addition, there are only around 120 individuals identified around the world with disease-causing mutations on DLG4.  Without your help, we will never find the financial/pharmaceutical partner to help us accomplish our goal of a treatment for DLG4, because large companies cannot make money off of drugs for such few individuals.

Currently, the HOPE for Harvey Foundation has multiple research projects in the works, with 3 projects targeting specific treatment pathways for DLG4.  These projects include:

1) Targeting DNA: Through a non-harmful virus called an AAV, which sends a healthy copy of DLG4 into the body.  This research is being conducted at Hebrew University.  Please see the video of the researcher explaining how it works on our website under treatment!  This project is in collaboration with the SHINE Syndrome Foundation (another name for DLG4).

2) Targeting RNA: Through a synthetic molecule called an ASO in collaboration with the Yu Lab at Harvard and Everlum Bio in Austin, TX.  Please see our family video with comments from the Chief Scientific Officer at Everlum on the home page of our website for more details.

3) Targeting Protein: Through testing large drug libraries on Harvey’s mutated neurons for positive effects on his cell functioning and protein expression at Everlum Bio and potential collaborators such as the Broad Institute.

We are also working on two animal models for DLG4, a nonsense variant rat and a missense variant Harvey-specific mouse with two different grant programs at  the University of Alabama-at Birmingham and Jackson Laboratories in Maine respectively.  In addition, we have begun discussions with labs on a toxicology/safety study of our ASO and assistance with navigating the FDA application process. We have also helped initiate a phenotype study of DLG4 at the Children's Hospital of Philadelphia in collaboration with Dr. Tümer's lab in Denmark, patient registries, as well as the beginnings of a DLG4 Family Conference with researchers for summer 2024.  We are also actively working to find a research partner for a Natural History study of the disease for the greater community.

100% of donations go directly to researchers, as the the foundation personally covers all operating expenses.  The HOPE for Harvey Foundation is a 501c3 nonprofit organization, which allows for tax-deductible donations.