All About the AGSD
Association for Glycogen Storage Disease
1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702
*This address is an electronic virtual address that allows board members to electronically access mail sent to AGSD. It is NOT a physical office for AGSD. AGSD does not maintain a physical office .
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:
- sharing their successes and concerns
- sharing useful findings
- providing support
- creating an awareness of this condition for the public
- stimulating research in the various forms of glycogen storage diseases and have the results communicated to the parents, affected individuals, and the public as soon as possible.
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 Kim Burney. 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 AGSD has a free pamphlet with basic information about the glycogen storage diseases and the AGSD, which is available for printing and distribution.
The AGSD has also created a handbook, "Glycogen Storage Diseases, A Patient - Parent Handbook", which has more in-depth information about each of the most common types of GSD. The handbook is available for purchase from the AGSD Store.
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:
- Greatly increase our publicity effort.
- Solicit more actively to get Congress to increase research support.
- Increase our help to individual families of patients.
- Improve our educational tools and efforts for the families and the public.
- Provide referral services to identified treatment facilities.
- Respond quicker to requests from the medical community.
- Support a fellowship for a young investigator in one of the universities active in GSD research, so the individual could work full-time on GSD research.