Re: Re: For Chuck Mohan:?? The UMDF Announcement

October 14, 2004

In a message dated 10/14/2004 2:51:07 PM Eastern Standard Time,

thefourofus03@... writes:

We need an organization set up to help us live, get us

the things we need to meet out goals, help our family's, our

children. All in all that is what we all strive for.

Hi Dawn and others,

I know of several patients who have similar suggestions. They took their

thoughts to thier mito doctor. Based on their suggestions, the mito doctor and

his nurse practitioner (from New England Medical Center) have started a

committee, along with a group of patients. The committee is called the

Mitochondrial Disease Action Committee and was created to address the issues

that

patients face on a daily basis. This committee is not intended to replace the

UMDF

but to add to what they are already doing. For instance, the committee is

currently working on getting CoQ10 covered by Mass. medicaid for all mito

patients and they are also doing a needs assessment of all mito patients seen

at

NEMC, Mass General and Boston Children's to find out what areas the committee

needs to focus on.

New England Medical Center is partnering with Mass General and possibly

Boston Children's to help more mito patients and are very much in the beginning

stages. If they get enough funding and support maybe they can expand it to a

national level at some point but right now they are focusing on the New

England area. They do have a website, but it is still being developed.

I just wanted you to know that your thoughts and the thoughts of others are

not going unnoticed by those in the medical community who are committed to

mito patients. If any of you live in the Boston area and are seen at these

hospitals and want to get involved in this committee, please e-mail me

privately.

Hopefully the efforts of the Mito Action Committee will one day be able to

benefit everyone on a national level.

Malisa

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