If I see one more thing about awareness for diabetes or breast cancer I m gonna...
Facebook-a-thon... NO no! Wait for it!
Maybe a motorized wheel chair race. Now that I would pay to see.
I'm all in for the nap-a-thon!!! I bet I would finally win at something!
Hospital bed races!!! OMG! The EDS Olympics!!!!!!!!
Bring your assistive devices/braces to work day!
Ok, gonna stop now :P
I posted this on my page as well and I had 2 able bodied people jump down my throat about it. But 3 or 4 chronically ill people agree. I'm sorry, but an able bodied person cannot possible understand. I didn't say these common illnesses don't deserve support, funding, and research. In fact I said they do. The only issue I have is the multibillion dollar industry that is "breast cancer awareness" that's the issue I take with it. Put a pink ribbon on something and people will buy it. And how much of that actually goes to research? Like 1% maybe. That's bullshit.
Ps- what about a walk for the cure, but we all ride zebras? :-)
I totally agree, but it's all about money- Researchers and pharmas make more monies dealing with the well known illnesses since there are more people diagnosed with them!
it would be great if more Doctors could somehow become interested in this field; However, they may not want to specialize in this since, once again, there aren't so many of us. EDNF seemingly never has enough funds for research- Oh, I just heard that they finally are building a research clinic; However, we need more Doctors in this field - I asked if Doctors ( other than the usual Speakers attend these conventions)- No answer. If one starts a Foundation, of course, eventually, the Members are going to want to see some progress and hope- One should also have some kind of monetary backing, and good management as it grows- I have not seen that with EDNF so far- I told my Doctor I had EDS- His reply was, Oh, like Marfan's- Yes, I was told this syndrome has been around longer than EDS; However, they only have 1 site ( which means People are not satisfied with the main EDS site, and they have grants so Researchers and Physicians can further study Marfans; However, EDNF seems to be a very secretive foundation, and don't seem to want to work together with other similar groups- So, to me, EDNF has remained stagnant due to lack of real management and marketing - If it's a real organization! EDNF only has 2 volunteers running the place? What started as a hobby has become a lot bigger, and change is needed!