The AGSD is active in fundraising and encourages its members to participate in local fundraising projects. Funds that have been raised have gone to support research, provided help in obtaining the pumps for nocturnal nasogastric feeding, assist in providing supplies when needed, and granted awards to help defray college expenses for individuals with the disease. The association has fostered publicity about the condition in local newspapers to the public aware of the condition, the need for research, and the need for support by the individuals with GSD.
AGSD Fun Run/Walk
Each year at the end of our conference, we hold a 1-mile Fun Run/Walk. Kids, parents, and even doctors join us for a short walk to show support and promote awareness of GSD. We pre-sell the t-shirts for a registration fee [and any additional donations].
About the association
The Association for Glycogen Storage Disease - AGSD - was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases.
This website provides basic information about the glycogen storage diseases. The information is intended to be of use to people affected by one of the glycogen storage diseases, their families, and other interested parties.
Some forms of GSD cause little in the way of illness, while others are life threatening. Included in this site is a description of the general symptoms, associated problems, current treatment, and long-term outcome for the most commonly diagnosed glycogen storage diseases. It does not do justice to the difficulty patients and their families' experience, and their deep desire for improved forms of treatment or ultimately total correction.
Association for Glycogen Storage Disease
1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702