Re: For Chuck Mohan:?? The UMDF Announcement

[Guest guest]

Kristie,

I would like to thank you personally for taking the time to write

this note to the UMDF, though it seems to have gone unoticed thus

far. I was very disappointed by the lack of support from my support

network that you pointed out, especially when I really needed them.

I thank you for bringing it to Chucks attention. I am afraid that so

much has gotten lost on " the cure " aspect of this dreaded disease

that many forget about the faces of us who are actually suffering

daily with it, or watching our loves one suffer. It is easier to not

notice. I actually am beginning to feel like a dollar amount has

been placed on my head. I heard about money at the conference almost

as much as I heard about medicine. I am not a dumb person, for I

know that it does take money to fund research, create medications,

etc, etc. Here we are suffering every day. We are trying to love. We

need help. 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. I think alot of

company's and organizations get lost and become lost on the bottom

dollar- I hope that is not the case here. I hope you get a response.

I hope it was better than the one I got.

Thanks again, Dawn

[Guest guest]

Kristie,

I would like to thank you personally for taking the time to write

this note to the UMDF, though it seems to have gone unoticed thus

far. I was very disappointed by the lack of support from my support

network that you pointed out, especially when I really needed them.

I thank you for bringing it to Chucks attention. I am afraid that so

much has gotten lost on " the cure " aspect of this dreaded disease

that many forget about the faces of us who are actually suffering

daily with it, or watching our loves one suffer. It is easier to not

notice. I actually am beginning to feel like a dollar amount has

been placed on my head. I heard about money at the conference almost

as much as I heard about medicine. I am not a dumb person, for I

know that it does take money to fund research, create medications,

etc, etc. Here we are suffering every day. We are trying to love. We

need help. 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. I think alot of

company's and organizations get lost and become lost on the bottom

dollar- I hope that is not the case here. I hope you get a response.

I hope it was better than the one I got.

Thanks again, Dawn

[Guest guest]

I can forward the messages from the list to Chuck if he doesn't read

them himself. He's on digest so I don't think he has had the chance

to read and respond yet.

Alice

>

> Kristie,

>

> I would like to thank you personally for taking the time to

write

> this note to the UMDF, though it seems to have gone unoticed thus

> far. I was very disappointed by the lack of support from my

support

> network that you pointed out, especially when I really needed

them.

> I thank you for bringing it to Chucks attention. I am afraid that

so

> much has gotten lost on " the cure " aspect of this dreaded disease

> that many forget about the faces of us who are actually suffering

> daily with it, or watching our loves one suffer. It is easier to

not

> notice. I actually am beginning to feel like a dollar amount has

> been placed on my head. I heard about money at the conference

almost

> as much as I heard about medicine. I am not a dumb person, for I

> know that it does take money to fund research, create

medications,

> etc, etc. Here we are suffering every day. We are trying to love.

We

> need help. 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. I think alot

of

> company's and organizations get lost and become lost on the bottom

> dollar- I hope that is not the case here. I hope you get a

response.

> I hope it was better than the one I got.

>

> Thanks again, Dawn

[Guest guest]

I can forward the messages from the list to Chuck if he doesn't read

them himself. He's on digest so I don't think he has had the chance

to read and respond yet.

Alice

>

> Kristie,

>

> I would like to thank you personally for taking the time to

write

> this note to the UMDF, though it seems to have gone unoticed thus

> far. I was very disappointed by the lack of support from my

support

> network that you pointed out, especially when I really needed

them.

> I thank you for bringing it to Chucks attention. I am afraid that

so

> much has gotten lost on " the cure " aspect of this dreaded disease

> that many forget about the faces of us who are actually suffering

> daily with it, or watching our loves one suffer. It is easier to

not

> notice. I actually am beginning to feel like a dollar amount has

> been placed on my head. I heard about money at the conference

almost

> as much as I heard about medicine. I am not a dumb person, for I

> know that it does take money to fund research, create

medications,

> etc, etc. Here we are suffering every day. We are trying to love.

We

> need help. 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. I think alot

of

> company's and organizations get lost and become lost on the bottom

> dollar- I hope that is not the case here. I hope you get a

response.

> I hope it was better than the one I got.

>

> Thanks again, Dawn

[Guest guest]

> " UMDF staff will answer non-medical questions and

> provide emotional support " .

That's interesting. I belonged to MGF, the Myasthenia Gravis

Foundation, and they actually had volunteer's who were RN's to answer

questions of general medical interest to those with neuromuscular

disease. In fact, I even used their service a few times after my

diagnosis changed to mito (but before it was proven to be mito). I

understand the service continues.

They answered stuff like, should I worry about taking a lot of

Tylenol or Advil, could this medicine cause this side effect, or

should i see my doctor for this?

Take care,

RH

[Guest guest]

> " UMDF staff will answer non-medical questions and

> provide emotional support " .

That's interesting. I belonged to MGF, the Myasthenia Gravis

Foundation, and they actually had volunteer's who were RN's to answer

questions of general medical interest to those with neuromuscular

disease. In fact, I even used their service a few times after my

diagnosis changed to mito (but before it was proven to be mito). I

understand the service continues.

They answered stuff like, should I worry about taking a lot of

Tylenol or Advil, could this medicine cause this side effect, or

should i see my doctor for this?

Take care,

RH

[Guest guest]

Dawn,

You are very welcome. I really hope others join in at this point and share

their thoughts as well. I'm frustrated too and agree with everything you've

said.

Kristie

Message: 3

Date: Thu, 14 Oct 2004 18:48:23 -0000

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

Kristie,

I would like to thank you personally for taking the time to write

this note to the UMDF, though it seems to have gone unoticed thus

far. I was very disappointed by the lack of support from my support

network that you pointed out, especially when I really needed them.

I thank you for bringing it to Chucks attention. I am afraid that so

much has gotten lost on " the cure " aspect of this dreaded disease

that many forget about the faces of us who are actually suffering

daily with it, or watching our loves one suffer. It is easier to not

notice. I actually am beginning to feel like a dollar amount has

been placed on my head. I heard about money at the conference almost

as much as I heard about medicine. I am not a dumb person, for I

know that it does take money to fund research, create medications,

etc, etc. Here we are suffering every day. We are trying to love. We

need help. 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. I think alot of

company's and organizations get lost and become lost on the bottom

dollar- I hope that is not the case here. I hope you get a response.

I hope it was better than the one I got.

Thanks again, Dawn

[Guest guest]

Malisa,

I am glad that you guys have a responsive mito doc who is willing

to help. I am so overwhlemed by my situation with my health issues,

my childrens health issues, my ex's court battles, finacial

burbdens and the unfortunate lack of time and energy our mito docs

have in our area to apply to our cases that we don't have the extra

help. This is why we NEEDED the UMDF. It is unfortunate that they

were unresponsive.It thought in the least they would call and see if

there was anything they could do before just coldy stating they

couldn't help.It is a thought though. If I ever get some free time

(yeah right), I will look into it. I appreciate your idea.

Dawn

[Guest guest]

Malisa,

That is so totally cool. I am in awe of what GOOD doctors can do, and how

organizations can develop to meet needs. Hopefully this will exist for us

all one day.

Kristie

Message: 6

Date: Fri, 15 Oct 2004 00:22:04 EDT

From: Malilibear@...

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

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