Re: Return from conference

August 8, 2004

Dawn,

Please rest, rest, rest, from the conference. I know it took a

lot of energy to go to it. I am glad that you were able to find some

people who live close to you. That will be a great support system. I

wish I could have been there to meet you! :-) Take it easy.

Smiles,

a

On Sun, 08 Aug 2004 15:14:38 -0000 " thefourofus03 "

thefourofus03@...> writes:

Just wanted to say that I returned last night from the conference

and I am sooooo exhausted. I heard many say they were disapointed

with this conference in comparison to other yrs. I had a great time

meeting others from the numerous groups-social aspect was great. I

had to travel to pittsburgh to meet someone who lives 10 minutes

from my house. I feel the docs or their staff need to do better

about hooking up those of us who live close and could be of some

support to each other. Why should we all feel so alone when we are

truly not so alone. As for the medical aspect of the meeting, I can

honestly say I don't think I learned one new thing. That is very

frustrating. I did meet with Dr.Shoffner who we will be seeing next

month so I feel better about that. There were alot of people and

alot of docs-why is so hard to find a doc when there were hundreds

of them there? All in all I am glad that I went but don't know if I

will go yearly-next one in St Louis next yr!Hope

August 8, 2004

Dawn,

I'm sorry to read that you were disappointed with the conference. I do know

that the highlight of the past conferences for me has been meeting the others

there who deal with the disease. The reason you probably didn't see anything

new is because there is no new information.

I'm going to go out on a long limb here but if you do not have a support system

with a UMDF Chapter/Support group near you, you probably do have an MDA Center

near you and they do have support groups and support meetings. Usually, you can

link with others who have similar diseases and I have met others with Mito who

know nothing about the UMDF. It's just a thought. Another option would be to

form your own support group which takes a lot of work for anyone who is ill.

Did you say St Louis for the next one? Hmmm.. that's central in the US and I

think a good choice. Maybe the UMDF needs to ask us what patients would like

to see. but since the conference is really intended for physicians as a source

of training I don't see them doing that. Physicians actually get college

credits for attending. If we can get our doctors to attend, that would be most

beneficial but for the most part, unlikely as in comparison to a disease like

Cancer or MS, we seem to still be a very small number and very expensive for the

medical centers to provide care for. As I've heard so often, they don't make

money from Mito patients and when it comes down to the bottom line, making money

is what these medical centers are all about, contrary to what we grew up to

believe.

Rest today. You deserve it.

Alice