Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 - I am willing to help with your new " quest " . Good idea. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Jeaninne I will be in Cleveland for the UMDF symposium and I look foward to working toward a common goal with all the mito community -----afterall all we have are each other. I will try to come up with some more ideas for funding , make some calls and of anyone else is interested please contact the list or me and we can GET TO WORK! ] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Goldenfam4@... wrote: > While I am > aware that certain research may ultimately benefit our MITO cause I am > extremely discouraged by the whole system. I emailed the NIH and asked them > what research they are involved in that pertains to Mitochondrial Diseases. I > also did some " investigating " and found the NIH received only $50,000 dollars > last year for Mito research and it was given by the UMDF. , your right, it is a shame that it takes so much " politics " to get the attention that is needed. We all need to do our part to educate as well as contacting all levels of government. The more people that they hear it from the more apt they are to respond. We can help by starting with our primary care physicians, and encouraging them to attend the UMDF conference this June, as well as the specialists that care for our children. When more doctors become aware of mitochondrial disease, it will be more easily diagnosed and the base of support increases. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Goldenfam4@... wrote: > While I am > aware that certain research may ultimately benefit our MITO cause I am > extremely discouraged by the whole system. I emailed the NIH and asked them > what research they are involved in that pertains to Mitochondrial Diseases. I > also did some " investigating " and found the NIH received only $50,000 dollars > last year for Mito research and it was given by the UMDF. , your right, it is a shame that it takes so much " politics " to get the attention that is needed. We all need to do our part to educate as well as contacting all levels of government. The more people that they hear it from the more apt they are to respond. We can help by starting with our primary care physicians, and encouraging them to attend the UMDF conference this June, as well as the specialists that care for our children. When more doctors become aware of mitochondrial disease, it will be more easily diagnosed and the base of support increases. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Goldenfam4@... wrote: > While I am > aware that certain research may ultimately benefit our MITO cause I am > extremely discouraged by the whole system. I emailed the NIH and asked them > what research they are involved in that pertains to Mitochondrial Diseases. I > also did some " investigating " and found the NIH received only $50,000 dollars > last year for Mito research and it was given by the UMDF. , your right, it is a shame that it takes so much " politics " to get the attention that is needed. We all need to do our part to educate as well as contacting all levels of government. The more people that they hear it from the more apt they are to respond. We can help by starting with our primary care physicians, and encouraging them to attend the UMDF conference this June, as well as the specialists that care for our children. When more doctors become aware of mitochondrial disease, it will be more easily diagnosed and the base of support increases. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Just wanted to also mention that at the recent NORD conference there was much discussion of ongoing research that will indirectly affect mitochondrial disease. I don't have the exact figures but there was discussion of research into the drugs that treat AIDS and cancer because they are so mito toxic. This is an exciting area and will indirectly benefit us even though the money is not directly going into " mito " . There was also a workshop on MR and DD that talked about the same thing. Research is being done at NIH into the causes of MR and DD and one of the primary causes has apparently been acknowledge to be related to mito. One more way that mito will be indirectly benefited. One more thing that you can do to help the cause is to be supportive of the NIH by contacting your congressmen and representatives and expressing your concerns. They hold the purse strings. Also, Steve Zullo has posted about the mini symposium in March with many of the Mito " greats " . Encourage your doctors and specialists to be there and learn..... Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 , We saw this show, and were appalled at the uneven distribution of funds. My husband said, " If diabetes patients get $28 per patient for research, where tdoes that leave mitochondrial disorders? " to which I replied, " Probably about $.02 per patient. " Sad, but probably pretty accurate. I agree that we need an advocate, someone who can really bring the spotlight on the ordeal we all go through. Unfortunately, i may be LOUD but I'm no Miss America :} so where does that leave us???? Anyone have an idea? ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Does anyone know of a celebrity/sports star that has a mitochondrial disorder or children with a mito disorder? Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 The only one I am familiar with is the cyclist that won the tour de france a few years back----I don't remember his name but there was an article in Exceptional Parent I think with his story. I also am in close contact with the UMDF and they are speaking with Kathy Ireland-----a childhood friend has a Mito disease and she donated all her winnings from Wheel of Fortune to the UMDF previously. I can check with at UMDF again and see where they are------they are trying to get her to be a spokesperson for UMDF. Maybe we could start a letter campaign ------------- I can tell you that we here in Florida had a letter campaign to Rosie O'Donell -she was supose to meet with us at a dedication ceremony for a special needs palyground that was having it's grand opening-----due to " scheduling conflicts " she was unable to make it-------but her assistant did say she read the letters-------might be time for some follow up to Rosie I plan to keep at this -------I'll keep you all updated and contact your local congress person ---lets get us some $$$$$$$$$$$!!!!!!!!! and Complex II-III Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Greg LaMonte was diagnosed with mitochondrial disease a few years ago. He did some fund raising for the JUMP Foundation in Michigan. It's a mitochondrial group. He was at one time a decathlon athlete, I believe.... or maybe a triathlete... MichSull@... wrote: > From: MichSull@... > > Does anyone know of a celebrity/sports star that has a mitochondrial disorder > or children with a mito disorder? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Just to get the facts straight: Greg LaMonde is his name and he was the first American to win the bike race, Tour du France. He won more than once and had problems training (from mito we know after the fact) and was highly lampooned in the sports press for being lazy. He now races cars-- less draining physically. Sue Ellen Picker Jeannine and Curtis Sawyer wrote: > > > Greg LaMonte was diagnosed with mitochondrial disease a few years ago. He did some fund raising for the > JUMP Foundation in Michigan. It's a mitochondrial group. He was at one time a decathlon athlete, I > believe.... or maybe a triathlete... > > MichSull@... wrote: > > > From: MichSull@... > > > > Does anyone know of a celebrity/sports star that has a mitochondrial disorder > > or children with a mito disorder? > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Just to get the facts straight: Greg LaMonde is his name and he was the first American to win the bike race, Tour du France. He won more than once and had problems training (from mito we know after the fact) and was highly lampooned in the sports press for being lazy. He now races cars-- less draining physically. Sue Ellen Picker Jeannine and Curtis Sawyer wrote: > > > Greg LaMonte was diagnosed with mitochondrial disease a few years ago. He did some fund raising for the > JUMP Foundation in Michigan. It's a mitochondrial group. He was at one time a decathlon athlete, I > believe.... or maybe a triathlete... > > MichSull@... wrote: > > > From: MichSull@... > > > > Does anyone know of a celebrity/sports star that has a mitochondrial disorder > > or children with a mito disorder? > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Ruth, One of the big stumbling blocks is that many of our own PCPs don't even have a good understanding of mitochondrial disease. They are at a loss when it comes to managing us, and rely on specialists, who know little more. At this rate, there are probably countless people going undiagnosed. Until this generation of medical professionals becomes better educated about mito/metabolic disorders we will likely stay on the back burner. You can help by encouraging your primary care docs, as well as your specialists to do everything that they can to learn about the latest information regarding mitochondrial disease. We still have people going for frozen biopsies, assuming that they are getting an appropriate eval, and yet coming out with invalid information. We still have docs testing patients for a few known mtDNA mutations and ruling out mito disease entirely, when the test comes back negative. We as patients have to help educate our physicians and encourage them to attend any workshops available. You can start by encouraging your docs to join the UMDF, and to attend both their conference in June as well as the NIH Mitochondrial Symposium in March. As they become more knowledgeable, more people will get accurately diagnosed and the base of support will increase. As well, many of the mitochondrial specialists will travel to major medical centers to speak about Mitochondrial Disease. Dr. Shoffner came here to our Arkansas Children's hospital many years ago, and we live in a fairly rural area. Dr. Bruce Cohen also travels and gives lectures, as do many of the other mito specialists. Medical students that are coming through the ranks right now, need this exposure and we need to encourage our local centers to tap into the available resources. You can put the pressure and make them aware of the need. But if they don't hear from you, they won't necessarily know to pursue it. Spread the word, and start with the medical profession. Meet with civic organizations as well as youth groups that are looking for community service projects and plan a fund raiser. The UMDF can help you with guidelines. There are always groups looking for a " cause " at the local level and we have to start somewhere. Communities all over the country have local fairs, and fall fests. There is a golden opportunity to spread the word and educate the general public. Advocate for your self, and for your child and teach your child to advocate for himself. We have to start at the bottom and work up; you can't build a pyramid upside down... it will topple. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Ruth, One of the big stumbling blocks is that many of our own PCPs don't even have a good understanding of mitochondrial disease. They are at a loss when it comes to managing us, and rely on specialists, who know little more. At this rate, there are probably countless people going undiagnosed. Until this generation of medical professionals becomes better educated about mito/metabolic disorders we will likely stay on the back burner. You can help by encouraging your primary care docs, as well as your specialists to do everything that they can to learn about the latest information regarding mitochondrial disease. We still have people going for frozen biopsies, assuming that they are getting an appropriate eval, and yet coming out with invalid information. We still have docs testing patients for a few known mtDNA mutations and ruling out mito disease entirely, when the test comes back negative. We as patients have to help educate our physicians and encourage them to attend any workshops available. You can start by encouraging your docs to join the UMDF, and to attend both their conference in June as well as the NIH Mitochondrial Symposium in March. As they become more knowledgeable, more people will get accurately diagnosed and the base of support will increase. As well, many of the mitochondrial specialists will travel to major medical centers to speak about Mitochondrial Disease. Dr. Shoffner came here to our Arkansas Children's hospital many years ago, and we live in a fairly rural area. Dr. Bruce Cohen also travels and gives lectures, as do many of the other mito specialists. Medical students that are coming through the ranks right now, need this exposure and we need to encourage our local centers to tap into the available resources. You can put the pressure and make them aware of the need. But if they don't hear from you, they won't necessarily know to pursue it. Spread the word, and start with the medical profession. Meet with civic organizations as well as youth groups that are looking for community service projects and plan a fund raiser. The UMDF can help you with guidelines. There are always groups looking for a " cause " at the local level and we have to start somewhere. Communities all over the country have local fairs, and fall fests. There is a golden opportunity to spread the word and educate the general public. Advocate for your self, and for your child and teach your child to advocate for himself. We have to start at the bottom and work up; you can't build a pyramid upside down... it will topple. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Sue Ellen Picker wrote: > > > Just to get the facts straight: Greg LaMonde is his name and he was the first American to win the bike race, > Tour du France. Thanks Sue Ellen, I was close but not quite there. Thanks for clarifying. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Sue Ellen Picker wrote: > > > Just to get the facts straight: Greg LaMonde is his name and he was the first American to win the bike race, > Tour du France. Thanks Sue Ellen, I was close but not quite there. Thanks for clarifying. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 In a message dated 10/14/99 3:06:09 AM Eastern Daylight Time, MichSull@... writes: << Does anyone know of a celebrity/sports star that has a mitochondrial disorder or children with a mito disorder? >> Tour de France winner Greg LeMond has a mitochondrial disorder. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 In a message dated 10/14/99 3:06:09 AM Eastern Daylight Time, MichSull@... writes: << Does anyone know of a celebrity/sports star that has a mitochondrial disorder or children with a mito disorder? >> Tour de France winner Greg LeMond has a mitochondrial disorder. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Dear Jeannine, My name is Mry Buckingham and I live in Kansas City. I am new to the Mitolist, and am waiting to have a fresh muscle biopsy (my third- the others were frozen) to determine I have Mito. May I please print your E-mail so I can discuss your points with my drs? You can reach me a marybuckingham@... Thanks, > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: 20/20 segment >Date: Thu, 14 Oct 1999 12:23:04 -0500 > >Ruth, > >One of the big stumbling blocks is that many of our own PCPs don't even >have a good understanding of mitochondrial disease. They are at a loss >when it comes to managing us, and rely on specialists, who know little >more. At this rate, there are probably countless people going >undiagnosed. Until this generation of medical professionals becomes >better educated about mito/metabolic disorders we will likely stay on >the back burner. > >You can help by encouraging your primary care docs, as well as your >specialists to do everything that they can to learn about the latest >information regarding mitochondrial disease. We still have people going >for frozen biopsies, assuming that they are getting an appropriate eval, >and yet coming out with invalid information. We still have docs testing >patients for a few known mtDNA mutations and ruling out mito disease >entirely, when the test comes back negative. > >We as patients have to help educate our physicians and encourage them to >attend any workshops available. You can start by encouraging your docs >to join the UMDF, and to attend both their conference in June as well as >the NIH Mitochondrial Symposium in March. As they become more >knowledgeable, more people will get accurately diagnosed and the base of >support will increase. > >As well, many of the mitochondrial specialists will travel to major >medical centers to speak about Mitochondrial Disease. Dr. Shoffner came >here to our Arkansas Children's hospital many years ago, and we live in >a fairly rural area. Dr. Bruce Cohen also travels and gives lectures, >as do many of the other mito specialists. Medical students that are >coming through the ranks right now, need this exposure and we need to >encourage our local centers to tap into the available resources. You >can put the pressure and make them aware of the need. > >But if they don't hear from you, they won't necessarily know to pursue >it. > >Spread the word, and start with the medical profession. Meet with civic >organizations as well as youth groups that are looking for community >service projects and plan a fund raiser. The UMDF can help you with >guidelines. There are always groups looking for a " cause " at the local >level and we have to start somewhere. > >Communities all over the country have local fairs, and fall fests. >There is a golden opportunity to spread the word and educate the general >public. Advocate for your self, and for your child and teach your child >to advocate for himself. We have to start at the bottom and work up; >you can't build a pyramid upside down... it will topple. > >Jeannine > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 - I am with you all the way, I will help in any way I can. Jeannine-Well said and let's educate everyone on this disorder. What a big difference in the basic knowledge of Autism that the public has. We can do it too!! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 - I am with you all the way, I will help in any way I can. Jeannine-Well said and let's educate everyone on this disorder. What a big difference in the basic knowledge of Autism that the public has. We can do it too!! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 What about Greg Lumond (sp??)--the guy who won the Tour de France several years ago and then found out he has mito.. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 What about Greg Lumond (sp??)--the guy who won the Tour de France several years ago and then found out he has mito.. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Jeannine, Excellent, sage advice all the way around. I guess I'll start right ihere in my own back yard. Maybe a little presentation to the pediatricians in the area? I've done it before with speech/language stuff--the docs do sit down and listen for a few minutes when I come bearing lunch and home made brownies. It's worth a shot. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 In a message dated 99-10-14 14:02:00 EDT, you write: << lets get us some $$$$$$$$$$$!!!!!!!! >> I second this! You go girl!! Quote Link to comment Share on other sites More sharing options...
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