The UMDF Announcement

[Guest guest]

-http://www.climb.org.uk/

http://www.niacmd.net/

This is an organisation in the UK that supports us folks with Mito.

and lots of other metabolic diseases and works with the Doctors.

They have Medical advisors to guide them. They are in the middle of

changing the constitution to add the words Adults.

I notice they also mention the states on their site.

Why do I give this link ...simply put when I was diagnosed they

helped my WHOLE family,..listened, wiped tears,helped with benefit

claims, equipment etc. and had the knowledge and experience to work

with my GP to ensure I was reffered to the best medics for my

condition.

Reading some of your posts lately I wonder if they may be of help to

you.....they deal with the whole issue not the pill popping..our

life and the knock on effect of this illness..work, family, home,

our marriages, and my advisor says they do work with some Americans

as well as the UK and Europe. Quality of life issues are paramount.

Gillian

-- In , Malilibear@a... wrote:

>

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

> thefourofus03@y... 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

>

>

>