Re: Celebrities

June 13, 2002

In a message dated 6/13/02 9:07:15 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< Oprah >>

While I'm sure she gets many, many requests, she has had a special bond with

Mattie Stepanek, and he has a form of mito. It would be best if one of the

mito guru docs had a connection with a celebrity and could inform them of the

wide spectrum, seriousness of mito.

I've been wearing my UMDF conference t-shirt several times this week (yes, I

have washed it in between...grin) and I've never had so many positive

comments about the design of the shirt. It's opened up a conversation window

to educate about mito, and with the simple message..about decreased cellular

energy. Whoever designed that shirt did an awesome job!!!!!

Dena

June 13, 2002

While I'm sure she gets many, many requests, she has had a special bond with

Mattie Stepanek, and he has a form of mito. It would be best if one of the

mito guru docs had a connection with a celebrity and could inform them of the

wide spectrum, seriousness of mito.

Dena

I agree with you about Oprah's fondness for Mattie...but I think that would kinda defeat our purpose on one hand b/c Mattie is the spokesperson for MDA this year and so any funds that could be generated from anything he is related to would need to be directed to MDA...we all have the opportunity to get benefits from MDA such as being treated in the clinics, help with adaptive equipment, and summer camps. However, MDA does not give any research dollars that is raises to fund mito research. I was told this was b/c they have not found a definitive link b/t the two diseases. As you know from being at the banquet Friday night when they award the researchers with Grants, that this was going straight into research that would benefit the mito population. Its not that I don't want anyone to support MDA...I used to go door to door with a can for them when I was little, its just that I for one, am tired of these orphan diseases not getting the money they need...meanwhile children die for lack of education and interest in them. So that said, I would love for Oprah to do a show just about mito...the terms that Matties' family uses I haven't been able to find anywhere...so it would be great if there were several families with different types shown so families out there who have sick kids with no dxs might be able to help thier kids...

as a disclaimer, let me say I adore Mattie and think he is truly a gift to this earth!

deb

June 13, 2002

Terri

I will check it out...I was told by the UMDF and by my local office at MDA

that they did not fund any research for mito...so that was my source...sorry

if I did say anything that wsn't true...however, I still would rather see the

money go straight to the UMDF and it become a known public non-profit

organization...

deb

June 13, 2002

Hi,

Does anyone know Jack Black, he's a kind of offbeat comedian, but he was on" Who wants to be a Miilionaire ", and his donation went to UMDF, because his sister had just been dx with Mito disease. He mentioned it on national Television. He is quite a character, but maybe he would be willing to get the whhel rolling for us.

Robin

June 13, 2002

Robin

I am so thankful he did that but I think it was before I knew about the

UMDF...I would like to see what he said and all...do you think he is a big

enough celebrity to get the ball rolling?

deb

June 13, 2002

Robin

I am so thankful he did that but I think it was before I knew about the

UMDF...I would like to see what he said and all...do you think he is a big

enough celebrity to get the ball rolling?

deb

June 13, 2002

Deb,

I think you're on to something big. Personally, I like the Oprah idea. I

think the Mattie Stepanek connection might help our case, and if we all

wrote letters . . . well, who knows? I would definitely be interested in

helping out in whatever way the group decides is best. Good idea!!

from Maine

Celebrities

> Hey there

>

> I had an idea about getting a celebrity interested in mito...first of all,

> anyone here have any connections with anyone big? just

took

> on Retts syndrome and now everyone knows about...if they could just

> possitively links retts and mito that would be even better. No, I am not

> suggesting her at all, but who else do you guys think of that might not

seem

> to have a big cause...Oprah and Rosie are always good but I bet t hey get

> millions of requests a year...altho I think someone like Oprah or 48 hours

> one of those shows, should do a story on it...anyway, I was thinking if we

> could collectively come up with a few celebrities...then we could ALL

write

> them...and see if anything happened! This would be the best way to get th

e

> word out to the public to get more money and also to h elp the thousands

of

> families out there who are trying to figure out what is wrong with thier

> child. Anyone with any connections would be great!

>

> How about Ben Affleck?

>

> glittery deb

>

> Please contact mito-owner with any problems or questions.

>

June 13, 2002

I don't mean to but in, but the statement that MDA does not fund any

mitochondrial disease research is untrue. In fact, only 9 of the 40+

neuromuscular disorders that are under MDA's " umbrella " are actually

muscular dystrophies.

Go to http://www.mdausa.org/research/grants/2002grants.pdf and do a search

on mito - you will be amazed at the number of their projects being funded

this year that are related to mitochondria - just search on mito in the pdf.

It is close to 20 different grants/projects.

Terri

>From: VisibleWorship@...

>Reply-To: Mito

>To: Mito

>Subject: Re: Celebrities

>Date: Thu, 13 Jun 2002 12:39:50 EDT

>

>In a message dated 6/13/02 11:17:46 AM Central Daylight Time,

>waislandgirl@... writes:

>

> > While I'm sure she gets many, many requests, she has had a special bond

>with

> >

> > Mattie Stepanek, and he has a form of mito. It would be best if one of

>the

> >

> > mito guru docs had a connection with a celebrity and could inform them

>of

> > the

> > wide spectrum, seriousness of mito.

> >

>

>Dena

>

>I agree with you about Oprah's fondness for Mattie...but I think that would

>kinda defeat our purpose on one hand b/c Mattie is the spokesperson for MDA

>this year and so any funds that could be generated from anything he is

>related to would need to be directed to MDA...we all have the opportunity

>to

>get benefits from MDA such as being treated in the clinics, help with

>adaptive equipment, and summer camps. However, MDA does not give any

>research dollars that is raises to fund mito research. I was told this was

>b/c they have not found a definitive link b/t the two diseases. As you

>know

>from being at the banquet Friday night when they award the researchers with

>Grants, that this was going straight into research that would benefit the

>mito population. Its not that I don't want anyone to support MDA...I used

>to

>go door to door with a can for them when I was little, its just that I for

>one, am tired of these orphan diseases not getting the money they

>need...meanwhile children die for lack of education and interest in them.

>So

>that said, I would love for Oprah to do a show just about mito...the terms

>that Matties' family uses I haven't been able to find anywhere...so it

>would

>be great if there were several families with different types shown so

>families out there who have sick kids with no dxs might be able to help

>thier

>kids...

>

>as a disclaimer, let me say I adore Mattie and think he is truly a gift to

>this earth!

>deb

_________________________________________________________________

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June 13, 2002

Deb,

I'm not sure, but let's see what others have to say.

Robin

June 13, 2002

Kass,

I read about Greg LaMond before my son was diagnosed. When I heard him speak I was sure that was what my son had, or a type of it anyway. I think he is a great choice. I know Jack Black is a little off the wall with his humor. I'll go with the flow from whatever you guys decide.

Ben Afflack sounds really good to me !!!

I am from RI and my Aunt knows Gilmans grandmother, and I know he recently met Mattie and was really touched. I quess the whole meeting brought him to tears..he was inspired by him...maybe he could get the word out? Just some thoughts.

Robin

June 13, 2002

Kass,

I read about Greg LaMond before my son was diagnosed. When I heard him speak I was sure that was what my son had, or a type of it anyway. I think he is a great choice. I know Jack Black is a little off the wall with his humor. I'll go with the flow from whatever you guys decide.

Ben Afflack sounds really good to me !!!

I am from RI and my Aunt knows Gilmans grandmother, and I know he recently met Mattie and was really touched. I quess the whole meeting brought him to tears..he was inspired by him...maybe he could get the word out? Just some thoughts.

Robin

June 13, 2002

I definitely agree! Sometimes the local MDA staff isn't all that

knowledgeable, just depends on who you talk to.

Terri

>From: VisibleWorship@...

>Reply-To: Mito

>To: Mito

>Subject: Re: Celebrities

>Date: Thu, 13 Jun 2002 15:14:41 EDT

>

>Terri

>

>I will check it out...I was told by the UMDF and by my local office at MDA

>that they did not fund any research for mito...so that was my

>source...sorry

>if I did say anything that wsn't true...however, I still would rather see

>the

>money go straight to the UMDF and it become a known public non-profit

>organization...

>

>deb

>

>Please contact mito-owner with any problems or questions.

>

June 13, 2002

Robin,

>I am from RI and my Aunt knows Gilmans grandmother, and I know he

>recently met Mattie and was really touched. I quess the whole meeting

>brought him to tears..he was inspired by him...maybe he could get the word

>out? Just some thoughts.

Well, better learn about mito, because my daughter Emilie says

she's going to marry him!

BTW, we found out last year what a nice kid is and what a nice

family he has. When we scheduled Emilie's spinal fusion surgery for last

summer, my husband wrote to 's agent and asked if they could send

her a photo or something while she was in the hospital (we thought it

would cheer her up since she adores him). A few days after Emilie's

surgery, a nurse came and found me and said, " You'll never believe who I

just talked to. " 's mother had called the nurse's station and asked

if it would be ok if called one of their patients, explaining that

they were going to send a photo to her but didn't get it out in time, so

would it be ok if he called instead? I guess! Shortly after that,

called Emilie and chatted for several minutes. The whole time she was on

the phone, her heart and O2 monitors went to zero and kept alarming. As

soon as she hung up, the monitors started working again. It was too

funny. Anyway, I was awfully impressed that he and his mom took the time

to do that for someone they didn't know. Very sweet.

-- Mom to:

Emilie (15), cerebral palsy, learning disabilities, suspected mito with

many autonomic symptoms

Kaitlin (15), cerebral palsy, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

June 13, 2002