Re: Celebrities

[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]

Dena,

What info do you have about the t-shirt

you mentioned. Can people who could

not go to the conference get one?

Re: Celebrities

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

Please

contact mito-owner with any problems or questions.

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Well Dena:

Here in Packer Land country, you have several families with mito. Milwaukee

area, Appleton, Sheboygan. So may be our beloved team would help in this area.

I know Brett Favre has a foundation that helps disabled children. We are going

to apply for a grant for a fully accessible playground here in Appleton, WI. So

I'm sure there would be families they could locate. We have a huge CP telethon

here and of course the Packers are involved with that. Gold outings to raise

money.

N. mom to Leah

waislandgirl@... wrote:

> 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

>

>

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

>

>

[Guest guest]

In a message dated 6/14/02 2:15:44 PM Pacific Daylight Time,

acowee@... writes:

<< especially as

Dena mentioned, with regard to cellular

energy.

>>

As I read that, I just thought...CELLULAR. How about approaching a cellular

(wireless) company as a corporate sponsor for UMDF research? :-)

Dena

[Guest guest]

In a message dated 6/14/02 2:15:44 PM Pacific Daylight Time,

acowee@... writes:

<< especially as

Dena mentioned, with regard to cellular

energy.

>>

As I read that, I just thought...CELLULAR. How about approaching a cellular

(wireless) company as a corporate sponsor for UMDF research? :-)

Dena

[Guest guest]

In a message dated 6/14/02 2:42:35 PM Pacific Daylight Time,

mary@... writes:

<< What info do you have about the t-shirt you mentioned. Can people who

could not go to the conference get one?

>>

I'd call the UMDF office and see if they have any left. I personally think

it should be the permanent logo for UMDF. It is truly a neat design and

speaks for itself!!!! :-)

Dena

[Guest guest]

In a message dated 6/14/02 7:11:26 PM Pacific Daylight Time,

marymooj@... writes:

<< you are not the only baseball FANatic here! >>

LOL...glad to know it. Maybe it was just the Dallas conference attendees. I

was at a loss without someone to watch Mariners games! ;-)

While it has some incorrect info (which I've asked them to correct, but they

haven't done so yet...like that I have 4 children with medical

problems.... and are the only ones who have current problems.

I don't really consider na's cataract/vision problems as medical

problems and that spends a lot of time in a wheelchair..he only does

for long family outings and when it is very hot outside), the Moyer

Foundation did surprise us with listing our family as an " inspiration " on

their website. I was quite honored/touched, although my kiddos are very low

key about all they've done. I'm the one that brags about them....'cause I'm

so proud of their giving spirit. They actually raised almost $5,000 last

summer, including the starting even described on the website. If you want to

take a look, it's at www.moyerfoundation.org, then under " inspirations " , then

" royal family. " My kiddos collected lots of ebay stuff over the past year

and have already delivered it for this year's bowling tournament, and will

wait in line for this year's Ichiro bobblehead to add to their donations.

They've never taken a free ticket or anything else (although offered) because

they voted among themselves, saying that they didn't want anyone to think

their donations/efforts had " strings attached " or were for alterior motives.

But, I wouldn't mind asking for mito support, if/when we get a firm diagnosis.

Dena (p.s. the cute lady in the pic on the website is NOT me..it's

Moyer's incredibly sweet wife, Moyer.)

[Guest guest]

do you have any friends in a sorority? if so, why not ask her to hook you up

with one to get something started?

also...on the way of school...just for a smaller fund-raiser...if your kid is

at a really supportive school...one teacher helped us raise money for andrew

by doing a 'High Five for ' thing...she just asked all of her students

to bring in $5 for him...it ws great and this was a poor innercity

school...but her kids from the 5 periods she teaches, raised $600...she was

just one teacher! She even made posters herself with 's picture on

it...and the logo she created...it was great!

deb

[Guest guest]

Just a thought on Celebs...

I am a college student, and frequently various college frats/sorietys

(sp?) look for various illnesses/causes to raise money/awareness

for. What about contacting local colleges to help out? College

sports teams might also be willing to do say, do a day where a dollar

from the sale of every ticket goes to the UMDF...

-Jenn

(21yo, Mito. Myopathy...suspected MELAS)

> I LOVE baseball!

> And I think a sports figure would make

> a terrific spokesperson, especially as

> Dena mentioned, with regard to cellular

> energy.

>

> Warmly,

> Alessia

>

> Even now, the world is bleedin'

> But feelin' just fine, all numb in our castle

> Where we're always free to choose

> Never free enough to find

> I wish something would break

> Cuz we're runnin' out of time.

> And I am overcome,

> I am overcome.

> Only water in my lungs,

> I am overcome.

>

> Lyrics by Ed Kowalczyk/Sung by Live

>

> We Will Never Forget the Victims, Families, Heroes,

> September 11, 2001

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

> Alessia Cowee, Children's Writer

> Advisory Committee member, North Central California, SCBWI

> Critique Group Coordinator Yuba County and Points North

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

[Guest guest]

dear dena,

you are not the only baseball FANatic here! because emmy loves the red sox so much our whole family now watches whenever they are on t.v. and the girls mimic their favorite players on the softball fields -i know many of the players do charity work around boston----i also think one of my cousins has connections /works for a fund-raiser promoter?

think i better give him a call!

mary

waislandgirl@... wrote: 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]

,

He is such a nice kid. I'm glad he sent Emilie his picture.

Robin

[Guest guest]

,

He is such a nice kid. I'm glad he sent Emilie his picture.

Robin

[Guest guest]

Deb,

Gilman is from RI. He's not here to often, but his family is.

Robin

[Guest guest]

Deb,

Gilman is from RI. He's not here to often, but his family is.

Robin

[Guest guest]

Deb,

I'll see what I can do

Robin

[Guest guest]

Deb,

I'll see what I can do

Robin

[Guest guest]

Deb,

I'll see what I can do

Robin

[Guest guest]

Deb,

I personally don't belong to a sorority; however, I am a college

student and there are lots of them between Temple, UPENN, and Drexel

around here. I'm sure that it wouldn't be hard for me to gain access

to one or a few of them. I'm heading up to campus next week, I'll

stop in the activities center to see what's up for next year.

Peace.

(lol...haven't been called in a long time)

>

>

> do you have any friends in a sorority? if so, why not ask her to

hook you up

> with one to get something started?

>

> also...on the way of school...just for a smaller fund-raiser...if

your kid is

> at a really supportive school...one teacher helped us raise money

for andrew

> by doing a 'High Five for ' thing...she just asked all of her

students

> to bring in $5 for him...it ws great and this was a poor innercity

> school...but her kids from the 5 periods she teaches, raised

$600...she was

> just one teacher! She even made posters herself with 's

picture on

> it...and the logo she created...it was great!

>

> deb

[Guest guest]

On sport celebrities.....we know a few. Bruce s who used to

play for the Houston Oilers and now plays for the Tennessee Titans

knows my father pretty well and used to assistant coach at my kids

little league. He has quite a large family and is EXTREMELY NICE!!!

There is also a old Houston Oiler player named Greg Bingham that we

know.....but I don't know how " well known " he is anymore. My father

knows quite a few sports celebrities that are local to the Houston

area, however, I will say this...many of them are HUGE supporters of

the Leukemia Society, but not spokes people by any manner.

My father also went to school with Pickett and dated

Swayze's sister (his family also knew 's family) but that is

probably REALLY REALLY a long shot.

Have to ask him if he knows anyone else that I can't think of...

[Guest guest]

call daddy up and see what he can do! What does your dad do to know all

those people? Is he a coach?

deb

[Guest guest]

call daddy up and see what he can do! What does your dad do to know all

those people? Is he a coach?

deb

[Guest guest]

Deb....

My father is an auctioneer....mainly does cattle, but also does a

host of big charities including the Leukemia Society, and Star of

Hope which also draws some big names. My father is also a salesman

and has worked with some high profile Houston accounts for over 30

years allowing him to meet various people. On top of all that, his

parents had the first recording studio in Houston (recorded people

like Little , Crystal Gail, , and lots of other

famous people that I don't know) so that is how he met some others.

That exposure led him to a junior college for the performing arts in

Texas.........I will be going home at the end of July, but I will see

if I can talk to him before hand......

and Luke

>

>

>

> call daddy up and see what he can do! What does your dad do to

know all

> those people? Is he a coach?

>

> deb