ANNOUNCING PGC Research Fund
For years, people in the community have asked "Why isn't PGC funding research?", or "Can I contribute to research into galactosemia?". Doctors have indicated that it would take a minimum of approximately $100,000 Dollars (US) to begin to fund substantial research. As this amount was clearly beyond the funds available to the organization, PGC neither funded research nor raised funds for this purpose. The dream of research for parents, funded by parents has gone unfulfilled. But progress towards the future is made one step at a time. So today, PGC is taking the first step towards the future of galactosemia research.
PGC is happy to announce the establishment of a separate fund specifically for the purpose of one-day funding research into galactosemia. Donations marked for this fund will be deposited into a separate bank account and not be used to fund the general operations of the organization. PGC expects that it will take several years before donations sufficient to fund research will be received. PGC hopes that volunteers will step forward to launch special fundraising activities aimed at reducing that time. But through sure and steady progress, the dream of research into topics of real interest to parents in the community will one day be made reality.
PGC's newly forming medical liaison committee and the PGC board will be developing a plan for implementing a research program that will oversee the use of these funds. Too many times, parents are left scratching their heads after hearing a presentation of research results or plans for future research. They often have a hard time understanding exactly how the research helps them make an informed decision about how to raise their child with galactosemia. PGC's medical liaison committee will gather opinions from parents in the community to determine which areas of research are most important to them. The committee will then use this list to help determine which research proposals to fund. By funding the research, PGC will be able to influence the things that are studied so as to insure that the focus is on arriving at useful results.
It is absolutely essential that the community realize that donations to this new research fund must be IN ADDITION TO, and not INSTEAD OF, donations to the general fund. If PGC experiences a drop off of it's already low donation level, it will cease to be able to provide services such as newsletters and conferences. PGC is working hard to focus on activities that the community wants and needs. So, please consider making a donation to help PGC advance our dual mission of ongoing support to families, and funding research into medical knowledge that help parents help their children. Mail donations to:
Parents of Galactosemic Children, Inc.
Research Fund
P.O. Box 2401
Mandeville, LA 70470-2401