Unlock Ollie's Treatment: $1.56M Needed by February 28th, 2026
Clinical‑grade AAV9 for AGU has been manufactured but won’t be released until a $1,560,000 balance is paid. Your gift immediately unlocks the drug and moves children into the first human trial.
This is the single funding barrier between Ollie and a potential one‑time treatment. Give now to release the medicine, accelerate FDA processes, and enroll kids into the trial. We have two immediate actions: contribute in English or in Spanish. Every gift—large or small—directly reduces the gap and shortens the timeline.
The Single Barrier: $1,560,000 Holds the Therapy Back
Manufacturing is finished and preclinical work supports safety and effectiveness — the only remaining step is payment to release the clinical‑grade drug for human trials.
Researchers have completed preclinical testing and the AAV9 batch has been manufactured. The manufacturer is withholding release pending the final balance. That $1,560,000 is not an abstract goal — it's the legal, immediate key to putting the therapy into patients. We’re running a tight timeline to meet the manufacturer's conditions and begin enrollment. Your contribution has direct, measurable impact: it unlocks the drug and starts the process to treat children.
What the funds unlock: Release of the clinical‑grade AAV9 drug so the trial can begin; logistics for shipment and storage; and initial patient dosing preparation.
Why the deadline matters: Manufacturer timelines, regulatory windows, and trial enrollment schedules require the balance be settled by February 28, 2026 to avoid months of delay.
How we’ll show progress: Regular updates, a public donation thermometer, and transparent accounting through the Rare Trait Hope Fund and Ollie Hope Foundation.
Funding Progress
Goal: $100,000 for Ollie's Goal
Meet Ollie — Joyful, Brave, and Running Out of Time
Ollie lights up a room, loves balloons and says "Thank you" — but AGU is a progressive disease. Without treatment, the decline is predictable and fast.
Ollie is playful, curious, and full of personality. AGU threatens to steal skills and independence over the coming years: seizures may begin within months, speech can regress in 2–4 years, full-time care could be required in 4–6 years, and life expectancy is shortened. We aren’t asking for sympathy — we’re asking for leverage: the funds to access a therapy that targets the root cause. Your donation is a direct, time‑sensitive chance to change Ollie’s life.
- In 6 months: risk of seizures increasing
- 2–4 years: likely loss of spoken words
- 4–6 years: likely need for full-time care
- By adulthood: severe decline without intervention
How AAV9 Gene Therapy Works — The Science, Simplified
This therapy delivers a healthy copy of the missing gene into cells using an AAV9 vector—preclinical tests are complete and the manufactured drug is ready for trial release.
AAV9 gene therapy delivers a healthy AGU gene to the nucleus of cells, aiming to correct the underlying cause of AGU at its source.
Gene therapy addresses AGU where it starts: the faulty gene. AAV9 acts like a delivery truck carrying the correct gene to cells so they can make the enzyme they need. In labs and animal studies this approach has restored enzyme function and improved symptoms. The next step—human clinical trials—requires the drug to be released. Funding closes that step and converts laboratory promise into clinical possibility.
AGU: Ultra‑rare, Devastating, and Often Undiagnosed
Only ~350 confirmed cases worldwide, but experts believe many more remain unidentified due to symptom overlap with autism and developmental delays.
Aspartylglucosaminuria is an ultra‑rare genetic disorder with a small, global patient population. Because symptoms overlap with other conditions, diagnosis is delayed or missed, which means many families lack access to specialized care or trials. Funding this trial doesn’t just help Ollie — it creates a pathway for other diagnosed and undiagnosed children worldwide to access targeted treatment.
Four Practical Ways You Can Help Right Now
Choose the action that fits you: give money, shop to support, spread the word, or sponsor trial costs—each step directly reduces the barrier to treatment.
Not everyone can give a major gift, but everyone can do something. Below are clear, actionable pathways with next-step CTAs so visitors can immediately help in the way that suits them best.
Donate — Fastest Impact
Make a one‑time gift or set up monthly support. Donations go directly to the Rare Trait Hope Fund to satisfy the manufacturer's balance and launch the trial. Plus every donation our friends from Google/ Adobe match it.
Transparent receipts and updates provided.
Incredible Auction — Full Makeovers, Wellness & Art Up for Grabs!
Some amazing friends are sponsoring an auction featuring incredible packages — from full makeovers, wellness bundles and anti-aging facials to so much more — plus unique art by celebrated Oaxacan artist Israel Nazario.
“A Gene of Hope” Fundraising Market & Wellness Bazaar
What to Expect 🛍️
A beautiful selection of brand-new items: clothing, jewelry, skincare, toys, and more.
Wellness- and self-care-focused extras: massage sessions, skincare packages, and wellness bundles — perfect if you want to treat yourself while supporting a great cause.
Shop for Ollie — Live Sales, Curated Finds, $15 to Start
Join our WhatNot live shows full of books, skincare, and Disney treasures—shop gifts and support Ollie at the same time.
Our WhatNot store raises continuous support and gives the community another easy way to contribute. Sign up to receive $15 free and shop during live events where a portion of each sale goes to the fund. It’s an immediate, low‑barrier way to help and a great gift alternative.
Other Support Options & Mailing Details
Prefer to give by check or sponsor part of the clinical trial?
Here’s how to make your gift trackable and grant‑eligible.
Checks payable to: The Ollie Hope Foundation — Mail to P.O. Box 712, Burlingame, CA 94011-0712.
Please write “#HelpOllie” in the memo so we can track your gift.
Rare Trait Hope Fund (EIN 46‑2762646) is managing the manufactured drug release. Ollie's family started The Ollie Hope Foundation as their (little bother) foundation so we can focus on local and Spanish education (EIN 39‑4961873) is a 501(c)(3) public charity.
Thank you for your support!
We provide receipts and public updates on fund usage.
Questions or receipts: [email protected] • 510‑766‑1297
