Re: Your Opportunity to Share.. Sorry Guys.. This One Is For The Women

[Guest guest]

Thanks for the heads up. I sent a story. They have never heard from me before

and the loss of my two children has proven to be a powerful story to raise

awareness. Maybe they'll pick it up!!

Jen DeMeo

(Mom to 2 deposits in mito heaven, Lee Jr (5yo), Leighs Syndrome, Complex I, and

8 mos (Complex I, Cardiomyopathy).

[Guest guest]

Jen,

It took great courage for you to write that story. Thank you for

caring enough to do it. I'm so sorry you lost your little ones to

this terrble disease. Awareness is the only thing that is ever going

to help us find the cure.

Alice

> Thanks for the heads up. I sent a story. They have never heard

from me before and the loss of my two children has proven to be a

powerful story to raise awareness. Maybe they'll pick it up!!

>

> Jen DeMeo

> (Mom to 2 deposits in mito heaven, Lee Jr (5yo), Leighs Syndrome,

Complex I, and 8 mos (Complex I, Cardiomyopathy).

[Guest guest]

Could you please send me a copy of your story or tell me where I can locate

it on the website.

Thanks,

's mom.

Complex 1 diagnosis

[Guest guest]

Dear Alice and Jen;

I also sent in a story regarding our daughter Leah with mitochondrial. I

informed them that even though I haven't been affected by a disease I didn't

know about. I told them about Leah's disease and how much information I get

from the internet and also this support group. Things to make me aware and

ask my doctor questions. Thanks Alice, may be as you said awareness of this

disease if not for this article, may be for another future story or show for

Ophrah.

mom to Leah

Alice wrote:

> Jen,

>

> It took great courage for you to write that story. Thank you for

> caring enough to do it. I'm so sorry you lost your little ones to

> this terrble disease. Awareness is the only thing that is ever going

> to help us find the cure.

>

> Alice

>

>

> > Thanks for the heads up. I sent a story. They have never heard

> from me before and the loss of my two children has proven to be a

> powerful story to raise awareness. Maybe they'll pick it up!!

> >

> > Jen DeMeo

> > (Mom to 2 deposits in mito heaven, Lee Jr (5yo), Leighs Syndrome,

> Complex I, and 8 mos (Complex I, Cardiomyopathy).

>

>

> http://www.umdf.org/support/listpolicy.html

>

>

[Guest guest]

,

As a Mom to three diagnosed children and the grandma to

fourteen..seven of which have the diagnosis, I really appreciate the

time you took to respond to this as every single letter will help.

Right now.. we are only beginning to break ground on awareness. Could

you imagine if Oprah picked this up? I know we have all thought

about an Oprah show on Mito before, but never have we had such an

opportunity as this to gain some ground.

I hope many others have taken the time to respond to this request for

stories about individuals who have gained knowledge about a health

issue via the internet.

Alice

Mito Patient as well

[Guest guest]

I seemed to have missed the original post regarding the stories. Could someone bring me up to date and tell me where the stories are to be sent and what they are looking for? The Oprah comments have really gotten my attention!

Thanks!

Sue