NIH/contact

[Guest guest]

Below is the contact for any one wanting info on the NIH EDS research study.

They can not invite you. You have to ask to be in. (Legality stuff.) You would

write the below email, ask to be in the study. You don't have to have a DX by a

genetics Dr. You have to suspect you have EDS. If you do not have a DX, they

will ask you some questions to determine if they feel you fit the study. If you

have a DX, just by asking you are in. That is what they told me. Travel

expenses are not included. Your room and meals are included. All costs are

government funded, And they want people to apply. They need 300 people and have

around 40 or so at the moment. The problem is that this study is not showing up

at the NIH Research web link and they just figured out why this week why that

is. They asked me to contact my groups and put the word out. I told them to look

to be bombarded in the next weeks to come! They can not guarantee help to every

person as to help and suggestions, but believe me they bend over backwards to

help if they do find something. They will contact your Dr. to tell them what

will help, if they know.

Expense? Well, believe me, I'm not rich, we are struggling like everyone else.

But I had no where else to go to get answers. With the help of a friend and my

mom, we paid for the airfare of $420 for the both of us from Detroit to

Baltimore, and $150 in handicapped shuttle vans because of the Electric wheel

chair. And we spent $10 on one Mcs Meal at the airport. That's it. If you

can drive, Great! It's basically free to you. My private insurance kicked in

when Dylan was at the alternate hospital, because of the chest pains/ER

situation. Those of you out of the US? I don't have an answer, but what the

heck? can't hurt to ask. I don't know how that works with the NIH. All I do know

was that it was worth everything to get the info we did, and the where to go

from here questions. I was at a stand still as to how to help my boy. I don't

like allot of the results. But at least now I know what we need to do now.

Cindylouwho/Cindy C.

PS She prefers Emails. She is a very busy lady, and if you email, you'll get

better results, even though it may take a couple days for her to get back to

you.

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Nazli McDonnell M.D. Ph.D.

Clinical Fellow

NIA/NHGRI

mcdonnellna@...

ph (TRIAD):

ph(Harbor-ASTRA):