Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 In a message dated 9/4/2000 8:15:01 PM Pacific Daylight Time, lcconley@... writes: << found myself very emotional and depressed. It was like I was watching it with different eyes this year. I am grateful for all that they do, but found it was much harder to watch it this year and could hardly watch without tears in my eyes. >> I wish everyone could watch it with the eyes that you had today. More would be done to help the MDA and CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 In a message dated 9/4/2000 10:11:17 PM Pacific Daylight Time, mikerobertac@... writes: << I watched the MDA telethon avidly as a child, don't know why: my family never cared for Jerry . >> My Mom hates jerry . jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 I was just diagnosed about a month ago with CMT, so this is the first year I have watched the Telethon, knowing I have CMT. I was eager to watch the telethon a few days before it started, but once I started watching it I found myself very emotional and depressed. It was like I was watching it with different eyes this year. I am grateful for all that they do, but found it was much harder to watch it this year and could hardly watch without tears in my eyes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 -----Original Message----- From: mikerobertac@... <mikerobertac@...> egroups <egroups> Date: Monday, September 04, 2000 11:55 PM Subject: [] Telethon > >a here > >I watched the MDA telethon avidly as a child, don't know why: my family never >cared for Jerry . I adored him. Isn't it interesting that that man is >helping my daughter and alot of you with his efforts? Today, I could hardly >watch it and I don't know why. When was first diagnosed, we were asked >to appear.(I don't think she was disabled enough or something because she was >never asked back and I see the same local kids over and over, the ones that >are afflicted with Duchenne, etc) I agree with Lamar. They are putting some >of the most heart-wrenching stories out there to grab people's heartstrings. >My neighbor has a disabled child,( he was born with no muscles) but his >disease is not under the MDA umbrella. She told me once she hated MDA and >thought we were being exploited. I couldn't agree with her less and yes, was >very hurt by her comment. > > loves to watch the telethon and was upset that the local affiliate cut >away before the ending national segment. > >To summarize, I will tell you that we have many family and friends who once >disliked the telethon who now donate because of and I think THAT is >what it is all about. And if they can find a cure or make major discoveries, >or buy more stuff for all of you who need it, than I say great and I thank >them for it!! > >a > >>>>>a, I give praise to the MDA too, but think that CMT should have more exposure, and show the difference between two persons, one mild, one severe and say it can be anything in between. This gives people a better idea of CMT is about. Its said CMT is THE most common of hereditary diseases, so why not include more exposure of it? Yes MD is life threatening, but so is CMT if ones breathing and or swallowing is affected. I give to the MDA, I also encourage CMTer's to contact the MDA in their area for help. But was a little let down not seeing more on CMT. I think its hard for us to watch knowing these children are not going to be here long if a cure is not found and we think of our own lives with CMT and are thankful its CMT!! Not MD! And we know how life can be hard for us, so we know its so much more for these children and their families. And we wish we could do more to help. It brings out so much emotion for us. At least it does for me. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Becky, I hear you girl! Believe it or not, you are making a difference just by participating in an email group like this. By voicing your concerns, other people will be more aware if and when they do get the opportunity to speak out in public. I know you have made ME do some thinking! The challenge each and every day on the home front is the most important one we face. Keep on keeping on. ANd keep talking. We're listening. Ruth >From: " Maxwell " <rmax@...> > >>>>Ruth, that is wonderful that you had the chance to speak out about >CMT. >We need more like you aound the world. And being a volunteer would be a >great way, however my plate is pretty full here. Its all I can do to get >dressed and take care of me and 3 kids plus hubby with M.S. flair ups off >and on. And I'm not a people person! In other words, I don't function >well >in large groups of people. I shy away! And the nearest MDA Chaper is at >least 50 miles from where I live! I'm lucky to go 5 miles from home any >more unless I have a appointment with my Neurologist who is 50 miles away, >then family drives me. And my Neuro is a MDA Dr. this woman who was on >the telethon was a patient of his associate!! Go figure! Of course half >the time my Neuro is in La-la land! LOL (IMO)..~>Becky M. > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Hi, Becky. Did you also see the young mom who appeared with the two young daughters whose CMT has caused them not to be able to walk?? (I only saw part of it - that part.) Overall, IMO, the telethon presents a balanced picture of the various diseases and their complications, and how the diseases vary among individuals, and the progression. There is a lot to forgive in the Telethon - there always is - there are always things that we would do differently, if we had the chance! But look at the results: over $53 million dollars raised! And some of that will go to CMT use! As others have said - just my two cents... Regards, Carolyn > > This morning there was a woman from my area on with CMT. However, in showing just her, and her symptoms with CMT it gave a very unfair picture of what CMT is and how it can affect persons with CMT. She had mild problems with her hands and feet only, she worked every day. And this is all that was told. Now, I'm going to be walking somewhere in my full leg braces and be asked whats wrong with me. If that person watched the Telethon, and I say CMT!!!! They are going to be looking at me like I'm some kind of nut or neurotic! Hey!! I saw that on the Telethon, it ONLY affects a persons hands and feet, and they can work and everything!! I know I'm right, I saw it on the Jerry Telethon and they don't lie! OK, so maybe I'm over reacting, but lets face it, they show the worst of MD to get money,so why not find another person who has many problems with CMT and show them? Tell the different types of CMT, tell how it VARIES among each person! I know they do wonders and thats great, but lets not misrepresent CMT please, we need all the help with exposure we can get. ~>Becky M. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 In a message dated 9/5/2000 10:55:02 AM Pacific Daylight Time, imagodei@... writes: << Right on Becky!!! Yes, we have a right to get angry when CMT is misrepresented. This is done all the time. People right here, on this post, say things like " CMT is not life threatening " . Well, I say - " then let them live an hour in my body and see if they still agree. " CMT in some people is life threatening regardless of what some medical establishment claimed in past history. Today, many of the medical establishments know the truth - that CMT is life threatening for some people. I could die anytime because I can `t >> My Mom told my Non CMT daughter that CMT was not so bad. That there is worse. My daughter said; " It's not bad if you don't have it, Try having it Gma " . LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 -----Original Message----- From: jacee17@... <jacee17@...> egroups <egroups> Date: Tuesday, September 05, 2000 11:32 PM Subject: Re: [] Re: Telethon >My Mom told my Non CMT daughter that CMT was not so bad. That there is worse. >My daughter said;((( " It's not bad if you don't have it, Try having it Gma " ))). LOL > > > >>>>>>Hey can I get a Tee-Shirt made with that saying in it!! I have wanted to say this to so many people. Now with my full leg braces, thats not said any more. But it used to be. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
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