An Overview of the Foundation
Submitted July 2005 by: Carol Dorward, President
Since its origin in 1990, funding research to find a treatment and/or a cure for HSN-1 has been the primary goal of Deater Foundation, Inc. In only 15 years, we have witnessed research success with the identification, in 2001, of the diseased gene. Family members can now choose to be tested (via a blood sample) to determine whether or not they carry the defective gene. And now we look forward to research news regarding treatments for complications of the disease and/or pro-active methods of preventing the onset or progress of the disease in affected family members.
Thankfully, over the years, we have had the interest and support of significant individuals in the medical profession—all of whom have been directly responsible for the success of the research which benefits our family. We are grateful for all who have helped us.
We appreciate, too, our own family and friends who have faithfully supported the research with prayer and finances. It is incredible to think that more than $216,000 has been donated to The Foundation over the past 15 years. As a result of the contributions (and interest), The Foundation has been able to support the research with more than $180,000 in that same span of time. Amazing, isn’t it?
The research continues; consequently, DFI covets your continued support, both in prayers and in finances.
As the family grows and technology advances, we would do well to “keep up” as best we can in order for future generations to reap the benefits of what treatments/ practices work and what doesn’t. Therefore, we urge family members who are able to check out the Deater Foundation website [deaterfoundation.org] and especially consider joining “The Forum” in order to share questions/comments/suggestions or “what works”/“what doesn’t work” [where treatments are concerned], symptoms, etc. The Forum is open only to our family members. It is a family link all year round, 24/7, instead of the once-a-year reunion.
In the event that you don’t have a computer (or are computer shy), consider providing any of the DFI officers with the information you’d like to include in “The Forum” database (perhaps via a written summary…or through a phone call). Then the DFI officer can enter your information in “The Forum” for you.
Be sure to provide your email address to me at (firstname.lastname@example.org) for the DFI email group in order to receive information sent periodically throughout the year. It is vital that we stay connected.
Thank you, once again for all you do to insure that the research for treatment of HSN-1 continues.