Re:Thanks, Bobby--my vision for the Group

[Guest guest]

Dear Bobby and Group,

<<I saw the uni doctor last week - really like her, seems like a 'go

getter' - she took lots of blood and is looking into food allergies!

She also recommended that I see a ENT in Double Bay because he has

Sarcoidosis and has spent many years researching the relationship to

food allergies! She warned me the wait is a good 5 months but it's

better than nothing! And being a doctor I may be able to interest him

in 's search for a research doctor. Will at least try.>>

I truly appreciate your thinking of the group as you hunt down a

doctor for yourself, Bobby.

I do feel that the ENT who has sarc. would be perfect to invite to our

group. It seems that when a person is personally fighting their own

battle with illness they are especialy motivated to do research.

Even if the dr. is not inteested in research at the present time, he

may wish to join us as our " medical advisor " which could be a first

step in getting him involved. I would not want him to feel pressured.

He could do as much or as little as he watned. Perhaps post his

research ideas for group input. Or maybe do an " Ask the dr. " feature

where he responded to group questions as often as he liked. NOT

questions like " I just got diagnosed with EN last week and I need to

know the cure. Thanks! " If I had a dollar for every time I got one of

those we'd have quite a nice little fund set up ;-/ I mean questions

that are meaningful and that are beyond non-medically trained persons

to understand.

I also envision having a " board " of MD's that could be part of our

Foundation--perhaps one from each field that sees EN: Dermatology, a

Gastro dr. who sees Crohn's, a Sarc. dr. a Rheumatologist, Infectious

Disease specialist, Allergist. They could network with each other and

compare notes across specialties. While specialization is wonderful,

it can serve to prevent dr's from seeing the big picture, and that's

where a good network of specialist could assist each other.

I know we have not yet set up the Foundation, but I like to look

beyond it to see what we can achieve. It keeps me motived to get it

set up.

I have a friend who has a friend who is an attorney. I asked him to

ask her for help in setting up our foundation. You see how far I am

going to find someone.

Please, Group if you personally know an attorney ask for his/her help.

All these ideas will die on the vine if we don't get the foundation

set up. I can't impress on you all how very important this first step is!

Happy Memorial Day, Everyone!

Love,