Response to Fletch for Freedom re: Gorham's Disease & Lymphangiomatosis

I added a clarification (pasted below) and hope that my posts will help increase the awareness and boost the website hits. Also hoping to help others in the understanding that Fletch was so right in that it is so difficult to get people to care - not just the ones with the wallets but the most important of all - the patients - doctors - and scientists...

Clarification LYMF/Gorham's patients
In the first part of my post regarding Gorham's and LYMF - I stated that I struggle getting patients to care...

The fact is that so many patients have been through so much and have been continually told there are no answers and there is no hope.

When they finally get past the worst humps (short periods of remission so to speak) - they only want to focus on making the most of their lives and don't want to spend time focusing on the disease.

It is so hard for patients and their families to get involved enough to make progress with the research as when they are not well there are so many issues they are dealing with (sort of like the so many causes out there to care about)...

Human characteristics make it very difficult to get the patients to seem to care enough as they have too many other issues to focus on and when a foundation is new and there has been no source of hope for so long - it is hard for them to focus their "disposable energies" (analagous to your disposable income and what to do with it)... and choose what to do with what they have...

Yes - I do understand your point very well and thus is the big struggle for building a foundation...