The Reality of It All....by Pez1103 Jul 9, 2007 13:20:22 GMT -5
Post by Administration on Jul 9, 2007 13:20:22 GMT -5
pez1103 said:This is reality as I see it:
- We all have a frightening, disabling disease. Many of us have loved ones who are also suffering.
- The medical community, in general, does not believe us, and will not believe us until we come up with scientific proof that the disease is not psychological.
- There is very limited research currently being performed because funding is so limited.
- No one knows what is causing our symptoms and there is no known cure
- The disease appears to be contagious to susceptible people -- generally blood relatives of sufferers
- The CDC moves at a snail's pace. It may take many more years for them to simply come up with a case definition and to stop calling this a possible "skin condition."
- New scientists have been approaching the MRF. They are willing to do research if the MRF will fund them.
- This disease is not easy to figure out. It is unlike anything that the medical community has seen before. The more scientists looking at it, the better. The more advanced equipt used, the better. The more time spent on research, the better.
- We can support the MRF so that they will get the money they need to fund research, or we can distrust them and continue the status quo.
- We can depend on one or two scientists to try to figure this out, or we can support more researchers, with different skills, resources, perspectives, abilities and talents.
- Some researchers truly want to help, but they need to support themselves and their families too.
- Philanthropists in general, want to give to the big, known diseases, like AIDS and cancer.
- 10,000 families suffering may seem like a lot to us, but there are dozens of other diseases which affect far more people.
- The public will support us and help us out when they finally realize that the disease is real and infectious and potentially contagious. But this will only happen after we have the necessary research.
- We must support each other to reach our common goal of finding a cure for this disease.
I trust Mary completely. I've gotten to know her over the past 8 months and she is a wonderful, caring, honest person. Like all mothers, she has the best interest of her children at heart when she makes decisions for the foundation. When I look back over my life, getting to know her will always be one of the most significant things that has happened to me. She has the courage to put herself out there and build a research foundation and work every single day on this cause. She has sacrificed so much. I believe that she will go down in history as a truly remarkable person.
I cannot wait for the day when this nightmare is over. I dream about the day when we all find a cure. I dream about the day that people know the truth about this disease.