If I see one more thing about awareness for diabetes or breast cancer I m gonna...

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  • Facebook-a-thon... NO no! Wait for it!

  • NAP-A-THON!!!

  • 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!