Harvey was born in March 2020 with a very rare genetic mutation. Once his family received his diagnosis, they decided to form the HOPE for Harvey Foundation in May 2022 in order to develop a treatment for Harvey's devastating genetic disorder. Harvey's genetic mutation relates to brain plasticity, and with a treatment, Harvey could potentially learn many of these things he can't currently do, including speaking, walking without assistance, and feeding himself, just to name a few.

As of December 2025, the HOPE for Harvey Foundation has raised almost $600,000, and in 2025-2026 we are hoping to raise another $160,000 to help offset the costs of the LNP mRNA project. Due to Grann Pharmaceuticals speed, safety profile of the mRNA treatment, and the incredibly low, at-cost price Grann is offering to small rare diseases communities, this will become HOPE for Harvey's primary focus for our research moving forward. If we keep on this track, we aim to be entering clinical trials by summer 2026.

Together with your donations and our family's assistance, we can do this, and help change the lives of so many children like Harvey.

Please visit our website: hopeforharvey.org for a better breakdown of current and anticipated costs on our treatment page.

Your 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.

A little bit about Harvey's story. Harvey was born 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 in addition to the later development of seizures.

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 neuronal 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 proving we can fix these protein deficiencies caused by the mutation, and therefore, improve symptoms. Currently there are around only 200 people in the world identified with DLG4 mutations. 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.

As of August 2025, the HOPE for Harvey Foundation has multiple research projects in the works, with 6 projects targeting specific treatment pathways for DLG4. These projects include the mRNA-focused approach listed above.

1) Targeting mRNA: Through the use of lipid nano particle (LNP), Grann Pharmaceuticals has shown through the start of a recent clinical trial for Retts Syndrome, that these particles can pass the blood brain barrier and carry good copies of mRNA throughout the body through regular infusions. These mRNA infusions can help compensate for DLG4 mutations, and allow for healthy expression of DLG4 proteins to help build better brain plasticity; and therefore, create developmental gains. This project is in the works currently. Grann will also be our partner on testing the mRNA on mice carrying Harvey's mutation, on our safety/toxicology studies, FDA approval, manufacturing, and coordination of our clinical trial. We could be potentially be in clinical trials by summer 2026!

2) Creating Models to Test Treatments: Through advocacy, grant applications, and funding, the HOPE for Harvey Foundation has helped create 5 different types of models that can be used to test treatments. 1) Mouse model at Jackson Labs in Maine, which carries Harvey's DLG4 mutation - Mouse Model is complete and the colony is currently being expanded and monitored for symptoms; 2) Neuronal Lines, which carry Harvey's mutation as well as control lines, which can be used to test various treatment options and a variety of drugs as well as identifying impacted pathways through RNAsequencing - Work is completed including RNA sequencing with some drugs and impacted proteins/pathways identified, but waiting on full analysis; 3) C. Elegan/worm model, which carries Harvey's mutation and can be used to test large drug libraries to try and improve symptoms - Model is complete and lab is currently working on larger drug study at UT Austin; 4) Stem cells lines (iPSC lines), which can be used for drug testing - Completed and transformed into neuronal lines and sent to other labs for further analysis; 5) Rat Model at University of Alabama at Birmingham-currently in the works/awaiting additional NIH funding

3) Targeting DNA: Through a non-harmful virus called an AAV, a healthy copy of DLG4 is sent into the body. This research is being conducted at Hebrew University and initial preclinical analysis of Harvey's neuronal lines shows this is an effective strategy for Harvey and other DLG4 mutations. Please see the video of the researcher explaining how it works on our website under treatment!

4) Targeting DNA: We are also working on a gene editing strategy (which involves using a molecule to bind to Harvey's DNA to change Harvey's mutated 'T' back to a 'C') with researchers at Harvard. We hope this work will continue in the coming months, as the mouse phenotyping moves along.

5) Targeting RNA: Through a synthetic molecule called an ASO. We have had some initial exploration of an ASO strategy on our neuronal models at NeuCyte, and we are currently in the application process with a nonprofit called n-Lorem to help us continue this work.

6) Targeting Protein: Through testing readily available drugs and peptides on Harvey’s mutated neurons for positive effects on his neuronal functioning, impacted pathways, and protein expression. This work is currently being explored at a private company called NeuCyte.

In addition to these efforts, 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, and patient registries/natural history data collection.

HOPE for Harvey Foundation Research Projects

By Hope for Harvey Foundation Inc

HOPE for Harvey Foundation Research Projects

Team Members