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:

1. Greatly increase our publicity effort.
2. Solicit more actively to get Congress to increase research support.
3. Increase our help to individual families of patients.
4. Improve our educational tools and efforts for the families and the public.
5. Provide referral services to identified treatment facilities.
6. Respond quicker to requests from the medical community.
7. 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.

Find out more about our Fundraising efforts….