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AGU initial symptoms are language/speech delay and clumsiness, which appear between two and five years of age. As the disorder progresses, language skills are affected the most. School-age children most often are diagnosed with an autism spectrum disorder and ADHD. Children continue to develop until their early twenties, but the learning occurs at a slower rate. AGU child’s life expectancy usually averages between 25 and 35 years of age, with young adults typically dying from infection. There is currently no approved treatment for AGU.

John Snell Interview

Aspartylglucosaminuria (AGU) is a rare, fatal, childhood metabolic disorder where body lacks aspartylglucosamidase (AGA), one of lysosomal enzymes. The enzyme is required to break down some sugars, which start to accumulate in the body.  It was first described in 1968 in England. 

Rare Trait Hope Fund is a 501(c)(3) non-profit organization with the mission to facilitate the development of a cure and to raise funds for a treatment of AGU.  The organization also works to increase awareness and screening for this misdiagnosed disease, and to be a resource for families, doctors, and scientists world-wide.

Latest article about our work and progress can be found here.

- Donate now to help fund the cure;
- Help us spread awareness, so AGU kids can get cure and the families will know they are not alone. 
- Like us on Facebook

We want to thank our most devoted supporters that help us achieve the impossible and finally cure the disease
NOH3, Inc., Red Dress Run
Phillips66 Company
Shell Oil Company Foundation
GE Foundation
Belle Chasse Volunteer Fire Department
Crescent River Pilots Foundation
Caesars Enterprise Services LLC
All South Consulting Engineers, LLC
Belle Chasse Lions Club
D&J Gauging Service, LLC
Stratus Systems, Inc
Faubourg Wealth Advisors 
Bubrig Insurance Agency, LTD
Bayou Barrier Golf Club
Hydratech, Inc
Jo Jo's Hope Enterprises, Inc
Cowboy & Sons LLC
New Orleans Jazz & Heritage Foundation
Audubon Nature Institute
Abita Brewery
Salon Jolie Spa and Boutique
Buds Boat Rental
The Columns Hotel
United Terminals
Medi-Rub Corporation
Delta Tires
Eagle Auto Body & Paint
Hyatt French Quarter
Hampton Inn Downtown
Martins wine cellar
and many other small businesses in
New Orleans Metro area
Tim and Jessica Aubin
Gaynel and Amanda Lavignette
Dr. Alla Comardelle
Bridget Dickinson
Kate Kenny
Albert Jean Paul Fulconis
Robert Fox
Diana and Kevin Alfortish
Melissa Melancon
Barbara Kennair
Lynn Smith
Nancy Wolf
Lucien and Patricia Jeanfreau
Richard Watler
Jude Kadiri
Stephen and Barbara Erwin
Robert Gravolet
Joan Strohmeyer
Gary and Louis Chauvin
Jennifer and Glenn Gardner
Denise and Ronald Buford
Lt Governor Billy Nungesser
Edward and Stacey Rocha
Belinda Hazel
Matthieu Fleys
Rona Frelich
Lane Greco
Dr. Stuart Guey, Jr
Charles Ballay
Jerry Turlich
Beau Black
John Snell
PJ Hahn
Dr. Neil and Sharon Wolfson
many children attending Belle Chasse High, Middle and Primary Schools and their parents 

Together, we can make the AGU treatment a reality. Thank you for your support!

Work in Progress