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.
WHAT IS AGU?
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
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.
HOW YOU CAN HELP:
- 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.
OUR SPONSORS and SUPPORTERS:
We want to thank our most devoted supporters that help us achieve the impossible and finally cure the disease
|NOH3, Inc., Red Dress Run
Shell Oil Company 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
Jo Jo's Hope Enterprises, Inc
Cowboy & Sons LLCNew Orleans Jazz & Heritage Foundation
Audubon Nature Institute
Salon Jolie Spa and Boutique
Buds Boat Rental
The Columns Hotel
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
Albert Jean Paul Fulconis
Diana and Kevin Alfortish
Melissa MelanconBarbara Kennair
Lucien and Patricia Jeanfreau
Stephen and Barbara Erwin
Gary and Louis Chauvin
Jennifer and Glenn Gardner
Denise and Ronald Buford
Lt Governor Billy NungesserEdward and Stacey Rocha
Dr. Stuart Guey, JrCharles Ballay
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!