Posted by Cranpain (152.163.201.209) on May 05, 2001 at 21:15:18:
Please understand that I am offering to help,and there is no self-grandification or boasting involved. I will simply tell of my experiences along these lines, and offer help to you.
In 1978, my youngest son died from a condition known as Reye's Syndrome. Nothing was know about it at the time, and nothing being done by the medical community (sound familiar)? My wife and I got heavily involved in a group known as the National Reye's Syndrome Foundation. I became the President of the Louisiana Chapter of this organization. We had much work to do, and spent much time and energy. You have much work to do, and it will cost you much time and energy. Here are some of the things that we worked on. I believe that some of them will parrallel yours.
1. Public Awareness. No one, other than families directly affected, knew anything about RS. We arranged presentations to different organizations, showing a film containing facts about RS. We were eventually "adopted" by the VFW, and traveled across the country giving presentations to them. Many people became aware of RS through these efforts.
2. Medical Community Awareness. Many doctors were not familiar with RS (sound familiar?). We tried, with little success, to work with doctors. They are difficult. Eventually, we had a law passed in Louisiana to require every case of RS to be reported to the Center for Disease Control. That may be a bit drastic for CH, but RS was killing people, mostly children.It was the beginning of the end for RS.
3. Fund raising. Membership dues will not begin to cover expenses for an organization serious about promoting their cause. You must explore ways to raise funds.
I may seem cowardly to some of you, but I do not envy you the task you have set for yourself. The RS effort took all the energy from me, forever, for this type of activity. Not only was it physically exhausting, but the memories haunted me continously. I wish you well, but can not summon the courage or energy to become actively involved again. I will be glad, however, to share our experiences, and help in any way I can in an advisory capacity.My E-mail address is cranpain@aol.com.
To offer a note of encouragement, our cause had a "happy" ending. It was discovered, after all the cases were reported, and some attention focused on RS, that aspirin given to children triggered RS. That is why the warning is on aspirin bottles today. Reye'Syndrome has virtually disappeared off the face of the earth. May your effort be so successful.