my recent tests, and MDA website handling of mito

[Guest guest]

Barbara's post was excellent. Some of the information on Mito on the MDA site

is pretty old but one thing we need to keep in mind is that the MDA is

researching many different diseases and with some apparent success. My belief

is that the answers to Mito will be found thru the MDA because the money is

there and if they find a cure for ALS or SMA which seem to be their focus, there

will be a trickle down affect to the other 40 some diseases under their

umbrella. It wasn't long ago when they said that there seemed to be a

connection with ALS and the Mitochondria. Quite frankly, I think that at some

point, they will determine that most if not all of their listed diseases have a

direct tie to Mitochondrial Disorder.

The MDA is the Muscular Dystrophy Association. This means that they deal with

the neuromuscular aspect of their diseases. Most people who have been to them

will tell you that the testing there is specifically done on the patients

neuromuscular symptoms. This is their expertise. Even then, many of their

doctors will tell you that they really don't know a lot about Mito but then I

have only found one doctor in the US who ever said he know anything about Mito

and did. That was Dr. Cohen.

As in Mito - there is an ALS Support system. I would love to see the UMDF

grouped under the support systems within the MDA. Mattie's experience was an

eye opener to the MDA but that family has not been involved with the UMDF. Even

now, Mattie's Mom is very much involved with the MDA after losing 4 children to

the disease and having it herself. Could it be that she sees the need for Mito

patients to work with the MDA where the reseach dollars are?

Sharon was a wonderful suggestion. I have participated with her in chats for

the MDA and have found her to be a very warm and understanding person. She will

tell you that she doesn't know much about Mito but she is always open to listen.

One thing is certain though...unless some great miracle occurs, it will be a

long time before the answers are found for Mito. I'm hopeful that it will be

found sometime in the lives of my affected grandchildren. I cannot see it as a

possibility for me or even my children. Finding needles in haystacks are

difficult at best and next to impossible and cost a great deal of money.

Alice