Re: Celebrities

[Guest guest]

Terri

I did go to the website and found quite a few...interestingly most of the

well-known researchers weren't on there, but it was interesting to see...I am

glad they are getting more involved...

deb

[Guest guest]

Terri

I did go to the website and found quite a few...interestingly most of the

well-known researchers weren't on there, but it was interesting to see...I am

glad they are getting more involved...

deb

[Guest guest]

Ben Affleck...I could go for that!!! :-) Actually, Greg LaMond, the famous Tour de France cyclist has mito

Who woudln't love for it to be Ben Affleck??? Interesting about Greg LaMond...I would like to know more about him...and is Gillam that young boy from Lousianna that sings? we might should chose several ones and write them all...

deb

[Guest guest]

Ben Affleck...I could go for that!!! :-) Actually, Greg LaMond, the famous Tour de France cyclist has mito

Who woudln't love for it to be Ben Affleck??? Interesting about Greg LaMond...I would like to know more about him...and is Gillam that young boy from Lousianna that sings? we might should chose several ones and write them all...

deb

[Guest guest]

Ben Affleck...I could go for that!!! :-) Actually, Greg LaMond, the famous Tour de France cyclist has mito

Who woudln't love for it to be Ben Affleck??? Interesting about Greg LaMond...I would like to know more about him...and is Gillam that young boy from Lousianna that sings? we might should chose several ones and write them all...

deb

[Guest guest]

sounds like you have an avenue to contact Gilam...have your daughter do

it!

Robin,

maybe you can talk to his grandmopther and see if you get anywhere...

deb

[Guest guest]

sounds like you have an avenue to contact Gilam...have your daughter do

it!

Robin,

maybe you can talk to his grandmopther and see if you get anywhere...

deb

[Guest guest]

sounds like you have an avenue to contact Gilam...have your daughter do

it!

Robin,

maybe you can talk to his grandmopther and see if you get anywhere...

deb

[Guest guest]

>is Gillam that young

>boy from Lousianna that sings?

He's a young country singer from Rhode Island, actually.

-- 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

[Guest guest]

>is Gillam that young

>boy from Lousianna that sings?

He's a young country singer from Rhode Island, actually.

-- 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

[Guest guest]

We all talk about actors, but how about a major sports star celebrity?

Especially considering the decreased cellular ENERGY theme of mito, sports

would tie right in. Now, I know I was joking at the conference that I seemed

to be the only baseball FANatic there, but seriously, many of the

baseball/football/basketball star players do A LOT for fundraising/awareness.

Maybe if we tried to get a baseball or other sports star from each major

league city where we all live, we'd get lots of exposure and fundraising! If

we start with the cities where major UMDF fundraising has already taken place

(and usually a large diagnosed patient base is located), then word of mouth

would spread about mito to other teams, and that would help in recruiting

player's in other towns!

Dena (who's kids were involved with sports related fundraising for children's

charities last summer....and they raised over $5,000 and got to interact with

some very caring sports stars!) While our fav player, Mariners pitcher

Moyer is already committed to several other childhood health causes, I've

been thinking about asking him to recommend another team player for mito.

But, since we don't have many identified mito patients here in Seattle area

and little awareness, I've been waiting.

[Guest guest]

We all talk about actors, but how about a major sports star celebrity?

Especially considering the decreased cellular ENERGY theme of mito, sports

would tie right in. Now, I know I was joking at the conference that I seemed

to be the only baseball FANatic there, but seriously, many of the

baseball/football/basketball star players do A LOT for fundraising/awareness.

Maybe if we tried to get a baseball or other sports star from each major

league city where we all live, we'd get lots of exposure and fundraising! If

we start with the cities where major UMDF fundraising has already taken place

(and usually a large diagnosed patient base is located), then word of mouth

would spread about mito to other teams, and that would help in recruiting

player's in other towns!

Dena (who's kids were involved with sports related fundraising for children's

charities last summer....and they raised over $5,000 and got to interact with

some very caring sports stars!) While our fav player, Mariners pitcher

Moyer is already committed to several other childhood health causes, I've

been thinking about asking him to recommend another team player for mito.

But, since we don't have many identified mito patients here in Seattle area

and little awareness, I've been waiting.

[Guest guest]

We all talk about actors, but how about a major sports star celebrity?

Especially considering the decreased cellular ENERGY theme of mito, sports

would tie right in. Now, I know I was joking at the conference that I seemed

to be the only baseball FANatic there, but seriously, many of the

baseball/football/basketball star players do A LOT for fundraising/awareness.

Maybe if we tried to get a baseball or other sports star from each major

league city where we all live, we'd get lots of exposure and fundraising! If

we start with the cities where major UMDF fundraising has already taken place

(and usually a large diagnosed patient base is located), then word of mouth

would spread about mito to other teams, and that would help in recruiting

player's in other towns!

Dena (who's kids were involved with sports related fundraising for children's

charities last summer....and they raised over $5,000 and got to interact with

some very caring sports stars!) While our fav player, Mariners pitcher

Moyer is already committed to several other childhood health causes, I've

been thinking about asking him to recommend another team player for mito.

But, since we don't have many identified mito patients here in Seattle area

and little awareness, I've been waiting.

[Guest guest]

Dena

thats a good idea too...I actually have a friend who knows all the Grizzley's

players and one of them just got MVP for the season out of the NBA...I cant'

remember who it is...it might have been the spanish guys...anyway, that is a

thought...even tho we are the only known mito pt in Memphis and they are our

only pro team...but I will think about that more and maybe try to contact him

through my friend...I do agree that if you are going to try for more local

celebrities that it would help to have more patients in your

city...otherwise, in our case, it is like asking th e star to take on

as a cause, if you know what i mean...hopefully if we all try then one star

will take it on and really put thier hearts in it!

I think for us to keep talking about it will help too...another good idea I

had...and I know I havent responded yet would be for us to take good emails

like the ones from the Question of the Day y esterday and print them and

share them...at this point, family stories are going to be a lot better for

them to understand than trying to understand any of the medical junk...

deb

[Guest guest]

Dena

thats a good idea too...I actually have a friend who knows all the Grizzley's

players and one of them just got MVP for the season out of the NBA...I cant'

remember who it is...it might have been the spanish guys...anyway, that is a

thought...even tho we are the only known mito pt in Memphis and they are our

only pro team...but I will think about that more and maybe try to contact him

through my friend...I do agree that if you are going to try for more local

celebrities that it would help to have more patients in your

city...otherwise, in our case, it is like asking th e star to take on

as a cause, if you know what i mean...hopefully if we all try then one star

will take it on and really put thier hearts in it!

I think for us to keep talking about it will help too...another good idea I

had...and I know I havent responded yet would be for us to take good emails

like the ones from the Question of the Day y esterday and print them and

share them...at this point, family stories are going to be a lot better for

them to understand than trying to understand any of the medical junk...

deb

[Guest guest]

Dena

thats a good idea too...I actually have a friend who knows all the Grizzley's

players and one of them just got MVP for the season out of the NBA...I cant'

remember who it is...it might have been the spanish guys...anyway, that is a

thought...even tho we are the only known mito pt in Memphis and they are our

only pro team...but I will think about that more and maybe try to contact him

through my friend...I do agree that if you are going to try for more local

celebrities that it would help to have more patients in your

city...otherwise, in our case, it is like asking th e star to take on

as a cause, if you know what i mean...hopefully if we all try then one star

will take it on and really put thier hearts in it!

I think for us to keep talking about it will help too...another good idea I

had...and I know I havent responded yet would be for us to take good emails

like the ones from the Question of the Day y esterday and print them and

share them...at this point, family stories are going to be a lot better for

them to understand than trying to understand any of the medical junk...

deb

[Guest guest]

In a message dated 6/14/02 10:29:19 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< at this point, family stories are going to be a lot better for

them to understand than trying to understand any of the medical junk...

deb >>

I agree. Part of the problem with getting local sports stars/celebrities to

take on the cause and " quest for a cure " is that they will want definitively

diagnosed families. In some geographical areas of the country, there aren't

many families that would fit that requirement.

Dena

[Guest guest]

In a message dated 6/14/02 10:29:19 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< at this point, family stories are going to be a lot better for

them to understand than trying to understand any of the medical junk...

deb >>

I agree. Part of the problem with getting local sports stars/celebrities to

take on the cause and " quest for a cure " is that they will want definitively

diagnosed families. In some geographical areas of the country, there aren't

many families that would fit that requirement.

Dena

[Guest guest]

In a message dated 6/14/02 10:29:19 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< at this point, family stories are going to be a lot better for

them to understand than trying to understand any of the medical junk...

deb >>

I agree. Part of the problem with getting local sports stars/celebrities to

take on the cause and " quest for a cure " is that they will want definitively

diagnosed families. In some geographical areas of the country, there aren't

many families that would fit that requirement.

Dena

[Guest guest]

Dena

I agree that b/c of the vastness of the symptoms and how unaccepted by a lto

of the medical community it is, it will be a harder sell...dont know what we

can do about though but just keep trying!

deb

[Guest guest]

Dena

I agree that b/c of the vastness of the symptoms and how unaccepted by a lto

of the medical community it is, it will be a harder sell...dont know what we

can do about though but just keep trying!

deb

[Guest guest]

Dena

I agree that b/c of the vastness of the symptoms and how unaccepted by a lto

of the medical community it is, it will be a harder sell...dont know what we

can do about though but just keep trying!

deb

[Guest guest]

I was told the T-shirts was a one-time thing b/c they are for the 'dallas'

conference...I would be interested in a 'mito-what?' shirt...and someone from

the UMDF said that the foundation sells them on the website but I forgot that

til just now...will have to look it up!

deb

[Guest guest]

Well an odd duck for an odd disease as it affects each child in a different

way. Sort of like the story of the ugly duckling and how it really

was a swan. This is an ugly duckling disease but all our children

are beautiful swans.

N. mom to Leah

Kass wrote:

Ben Affleck...I could go for that!!! :-)

Actually, Greg LaMond, the famous Tour de France cyclist has mito (its

what forced him into retirement), and I know he was involved with Tour

de Kids bike race in Ann Arbor for a number of years that benefited mito

research, although it does not appear to be the case anymore (race still

happens, but he is not involved and it benefits three other organizations

now). I have often wondered if he might not be a good representative,

especially since his was adult onset, which so many doctors don't seem

to realize does happen.

I love Jack Black for what he did to raise awareness and money, but

he IS an odd duck.....LOL.

BIG hugs,

Kass

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.

[Guest guest]

Well an odd duck for an odd disease as it affects each child in a different

way. Sort of like the story of the ugly duckling and how it really

was a swan. This is an ugly duckling disease but all our children

are beautiful swans.

N. mom to Leah

Kass wrote:

Ben Affleck...I could go for that!!! :-)

Actually, Greg LaMond, the famous Tour de France cyclist has mito (its

what forced him into retirement), and I know he was involved with Tour

de Kids bike race in Ann Arbor for a number of years that benefited mito

research, although it does not appear to be the case anymore (race still

happens, but he is not involved and it benefits three other organizations

now). I have often wondered if he might not be a good representative,

especially since his was adult onset, which so many doctors don't seem

to realize does happen.

I love Jack Black for what he did to raise awareness and money, but

he IS an odd duck.....LOL.

BIG hugs,

Kass

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.