Save Ollie Before It's Too Late
Researchers have completed the preclinical work and the clinical‑grade AAV9 gene therapy for Aspartylglucosaminuria (AGU) has been manufactured.
But the manufacturer will not release the drug until the remaining $1,560,000 balance is settled. That gap is the single barrier between children like Ollie and the first human trial; your gift directly unlocks the medicine and accelerates access to a potential one‑time treatment. (Rare Trait Hope Fund)
We only have
TO PAY AND CONTINUE THE CLINICAL TRIAL
Give Ollie A Chance At Treatment
Help Unlock the AGU gene therapy!
Your gift releases the manufactured drug and brings children one step closer to a cure.
Rare Trait Hope Fund • EIN 46‑2762646 • $1,560,000 needed • Goal date: Dec 15, 2025
Ollie Says "Hi y’all!!" and he really wants your help...
Meet Ollie
Ollie is our miracle boy - full of energy, always saying "Thank you," and believing painting should only be done on balloons so he can pop them.
But AGU is stealing him from us:
• In 6 months: He will have seizures
• In 2-4 years: He'll stop saying the few words he says.
• In 4-6 years: He'll need full-time care
• By his 20s: We'll lose him completely.
This isn't just a diagnosis - it's a countdown. And we're running out of time.
DON'T LET AGU WIN - DONATE NOW
Parents never want to hear, it is an incurable disease... Thanks to Rare Trait Hope Fund this might not be true...
Please, Help us take the chance we have NOW to fight for Ollie's future.
Learn how gene therapy helps → #science
Gene therapy works by fixing the problem at its source. It delivers a healthy copy of the missing or faulty gene directly into the patient’s cells. Once there, this new gene can start producing the enzyme the body needs—helping to restore lost function and slow down, or even reverse, the disease.
To make this possible, scientists use a delivery tool called a vector—often a harmless virus that’s been safely modified to carry the therapeutic gene. For AGU, researchers are using AAV9 (adeno-associated virus 9), one of the most advanced and trusted delivery methods available today.
The evolution of this disease is devastating...
Why help kids like Ollie?
Imagine knowing your child’s mind and body will slowly deteriorate until their twenties—all because their disease is too rare to attract a treatment.
Now imagine a therapy exists, already tested in animals with promising results—the same therapy that could change the blueprint of Ollie’s enzyme production.
But it sits locked away, waiting for FDA approval and human clinical trials.
This is our reality with Ollie and other children with Aspartylglucosaminuria (AGU).
Time is slipping away, and what stands between them and hope is money.
Please help us give Ollie! And every AGU child a chance at life.
There might be more of us...
AGU patients around the world
Aspartylglucosaminuria (AGU) is an ultra-rare genetic disorder with only around 150 confirmed cases worldwide. However, due to its overlap with autism and other developmental conditions, experts believe many more remain undiagnosed. AGU is more frequently identified in individuals of Finnish or Turkish descent, but cases span across multiple continents and ethnicities.
Meet other AGU kids and see what other families are working around the world.
Other ways to help Ollie —
donate, shop, share or sponsor the clinical trial.
Every action helps — whether you give right now, shop with purpose, host a fundraiser, or share Ollie’s story.
Pick any option below and we’ll show you exactly what to do next.
Call your friends and Family
Spread the word far and wide
Share Ollie’s story with your friends and family—even those overseas. We have friends in Canada, Australia, and Europe… and so do you! Awareness grows when we each reach beyond our own circles.
Print & Post a Flier
Download our ready-to-print flier
Pin it at your local coffee shop board, school, library, or workplace so others can learn and act quickly.
Connect Us with Influencers
Please connect us!
Do you follow someone with a strong voice online—or maybe one of your own friends is an influencer?
A simple introduction could amplify Ollie’s story to thousands.
Share on Social Media
Every share counts!
Post our story,
use the hashtag
#HelpOllie
and tag friends who
might support.
The more voices we have, the closer we get to unlocking Ollie’s treatment.
Prefer to mail a check?
Make payable to Rare Trait Hope Fund.
Mail to P.O. Box 741155, New Orleans, LA 70174 and write #HelpOllie in the memo so we can track your gift.
EIN: 46‑2762646.
Check what other families are doing around the world.
Thank you to all our friends and family!
Shop for Ollie, Get $15 Free!
We started a WhatNot store to help fundraise for Ollie’s medical expenses, and we’d love for you to join us!
Our live shows will be full of books, skincare goodies, and Disney treasures — the perfect place to do your Christmas Gift and also supporting a great cause.
And the best part? When you sign up, you’ll receive $15 FREE to shop.
Come hang out and shop with us!
The Ollie Hope Foundation EIN Rare Trait Hope Fund — EIN 46‑2762646 (501(c)(3))
To contact [email protected] • (504) 408‑1126
Donate: raretrait.com/donate
Mail checks: P.O. Box 741155, New Orleans, LA 70174 (write “#HelpOllie”)
© 2025 Rare Trait Hope Fund
510-766-1297
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