Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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 > ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 , He is such a nice kid. I'm glad he sent Emilie his picture. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 , He is such a nice kid. I'm glad he sent Emilie his picture. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Deb, Gilman is from RI. He's not here to often, but his family is. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Deb, Gilman is from RI. He's not here to often, but his family is. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Deb, I'll see what I can do Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Deb, I'll see what I can do Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Deb, I'll see what I can do Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 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... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 call daddy up and see what he can do! What does your dad do to know all those people? Is he a coach? deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 call daddy up and see what he can do! What does your dad do to know all those people? Is he a coach? deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 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 Quote Link to comment Share on other sites More sharing options...
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