Association for Glycogen Storage Disease
1542 Flammang Dr.
Waterloo, IA 50702
The Association for Glycogen Storage Disease [AGSD] is a parent and patient oriented support group that is advised by a group of experienced medical professionals.
The AGSD was established in 1979 in order to create an organization which would be a focus for parents of and individuals with all types of GSD to communicate by:
Our Mission Statement: The purpose of the Association for Glycogen Storage Disease shall be to protect and promote the best interests of all persons and families affected by Glycogen Storage Disease [GSD]; to promote the establishment, improvement, and management of facilities for the treatment, study, education, shelter, recreation, recuperation and other general benefit to GSD-affected persons; to act as a vehicle of communication on GSD-related matters to patients, families, professionals, and the public; and to act as a focus for scientific, educational, and charitable activities related to the disease.
The President of the Association for Glycogen Storage Disease is Iris Ferrecchia. She may be contacted at: president @ agsdus.org. The AGSD is governed by an all-volunteer Board of Directors and Officers, and is advised by a group of doctors and medical professionals, our Professional and Scientific Advisory Board.
The AGSD produces a newsletter, "The Ray" which is published quarterly. As a member of the AGSD, there is no charge to receive the newsletter. Each year, the AGSD compiles a directory of all current Active and Associate Members. The directory is distributed to AGSD members in the Spring issue of "The Ray". These membership lists are to be used for SUPPORT ONLY - whether for emotional (parent - affected) encouragement or professional guidance.
The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD, their families, and medical professionals involved in treatment or research of any type of GSD. The focus of these conferences is meeting other people and families affected by GSD, gaining a better understanding of the GSDs and their implications, and learning about the latest research findings and upcoming studies. The AGSD understands that having a family member with a rare medical condition is very difficult, so by gathering each year, we affirm and encourage each other. Find out about our Annual Conference...
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. As funds become available, we would hope to:
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