Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 >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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 >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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 14, 2002 Report Share Posted June 14, 2002 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 14, 2002 Report Share Posted June 14, 2002 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 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 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 Quote Link to comment Share on other sites More sharing options...
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 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...
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