Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Devin Ann Lamar here, I have mixed emotions about MDA, but they do help us more than other organizations. Much of the research on CMT has been funded by them. (I know CMTA helps with research also). They do not mention CMT a lot, probably because it is not considered to be life threatening. Lets face it, they are appealing for money. Tragedy is felt by anyone. I have seen that there are some optimistic stories this year on the telethon, but the sad appeals are what brings in the money. I helped for years when my health was good, with leading fund raising for a local children's charity. There is a psychology to appealing for donations. They use it. It works. We just need to speak out and make CMT better known as a part of it. ----- Original Message ----- From: Devin Ann son egroups Sent: Monday, September 04, 2000 01:34 AM Subject: [] MDA Telethon My Groups | Main Page | Start a new group! Hello all, and Happy Labor Day, I just wanted to here some feedback on something that always seems to bother me this time of year. As you all know, Labor Day weekend is the MDA Telethon. I realize the importance of the MDA and am greatly thankful for the help and support the have given me in relation to my CMT. I also believe that through their research there is a possibility for treatments for CMT. My dilemma comes in the range of emotions I feel provoked by the telethon. As a child, I was quite proud of my MD (which I called it instead of CMT). My sisters and I always spent Labor Day weekend running around the neighborhood raising money for the MDA fishbowl. Today, I feel somewhat ashamed that I have CMT. The rest of the year I am fine with it. CMT is a part of who I am. I don't have to like it and I don't have to hate. I also feel angry with the MDA with the way they only show the " worst " cases on the telethon. I would love to see someone like me, dealing with life the best way they can. Another feeling that I deal with is a bit of depression and hopelessness. It seems like there is so little progress from year to year. Do any of you have feelings like this, or am I unique in this? Sorry for the neurotic rambling, Thanks for listening, Devin Ann ===== Devin Ann son RevDev45@... (602) 253-2837(home) " Faith manages! " --Babylon 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Devon, A few thoughts of my own. First, any feelings you have are legitimate and should be voiced. Thanks for sharing. The goal of the telethon is to raise awareness and to raise money. Let's face it, research and patient services come with a whopping high price tag in today's society, and big bucks are needed in the fight. I like to think of the groups of diseases covered by MDA in two categories - life threatening and life altering. Life threatening means vital organs become invovled and mean premature death. Life altering means adaptation must be made to accomodate loss of motor skill and function, but within a near normal life expectancy. The primary media focus in any fight against disease will usually be in the fight against premature death. The diseases that cause death will usually receive greater coverage. That does not bother me. It does not mean the other diseases aren't important, but that there is greater urgency to figure out how to prolong life first. I have had many mixed emotions about the telethon just like you. In the end, I decided to become invovled with the MDA because they are working to help us out. Our local chapter asked my daughter to be the goodwill ambassador this year, and they have done a couple profiles on her. By accepting this duty, we have been able to go out and spread the message about CMT AND about other neuromuscular diseases, some less devastating than CMT and some more devastating. Do I wish there was another way to get the funding for research and patient services??? Sure, but what would that be??? Individuals and businesses need to know WHY they are parting with money when they donate to a cause. Keep asking questions and soul searching Devin. It's the only way to find out answers. Ruth >From: Devin Ann son <revdev45@...> >Hello all, and Happy Labor Day, > >I just wanted to here some feedback on something that >always seems to bother me this time of year. > >As you all know, Labor Day weekend is the MDA >Telethon. I realize the importance of the MDA and am >greatly thankful for the help and support the have >given me in relation to my CMT. I also believe that >through their research there is a possibility for >treatments for CMT. My dilemma comes in the range of >emotions I feel provoked by the telethon. > >As a child, I was quite proud of my MD (which I called >it instead of CMT). My sisters and I always spent >Labor Day weekend running around the neighborhood >raising money for the MDA fishbowl. Today, I feel >somewhat ashamed that I have CMT. The rest of the >year I am fine with it. CMT is a part of who I am. I >don't have to like it and I don't have to hate. I >also feel angry with the MDA with the way they only >show the " worst " cases on the telethon. I would love >to see someone like me, dealing with life the best way >they can. Another feeling that I deal with is a bit >of depression and hopelessness. It seems like there >is so little progress from year to year. > >Do any of you have feelings like this, or am I unique >in this? > _________________________________________________________________________ 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 4, 2000 Report Share Posted September 4, 2000 Hi, Devin. Sorry, but I don't agree. Yes, there are some really difficult stories to hear about and watch, and it is emotional. If it were not, would the hundreds of thousands of dollars be raised each and every year to support all these diseases? IMO, I don't think so. I think they're got to hit people where they live - in their hearts, and in their pocketbooks! I know I'll probably get some strong feedback about this - don't care - this is the way I feel. You and I are both entitled to our separate opinions. I know that the MDA is one of the best-run charitable organizations out there. Has been for years and years. I respect that and I respect the work that they do. One day a year publicizes what volunteers all over the country do, day by day by day, to raise millions and millions of dollars for us. FOR US!! Our disease would still be in the dark ages, were it not for MDA. That's the reason I feel the way I do. If they get emotional on the telethon that one day a year, so be it! I'm not ashamed of my CMT, not this day or any day. And I'm deeply grateful for MDA and that the great research has been done and is being done. It may not help me in my lifetime. But my daughter has not yet had children and we don't know what will happen with her children or their children, should she choose to bear children. I'm grateful there are some answers for her. Finally, my reading is that there is always Hope, big time, behind the stories. My heart is touched, yes, and I wish there were not so many people suffering and in pain out there. But I see there is always Hope. If there were no Hope, why would these people tell their stories? Some of them know perfectly well that, regardless of MDA, their children are still going to die from their diseases, some of them very soon. But they are still willing to tell their stories. Is there not Hope in that? You asked for responses. This is mine. I wish you the best, and hope you'll support MDA, regardless of how you feel about the Telethon. Yes, I'm on the soapbox! As always, take what you like, and discard the rest. Warm regards, Carolyn > Hello all, and Happy Labor Day, > > I just wanted to here some feedback on something that > always seems to bother me this time of year. > > As you all know, Labor Day weekend is the MDA > Telethon. I realize the importance of the MDA and am > greatly thankful for the help and support the have > given me in relation to my CMT. I also believe that > through their research there is a possibility for > treatments for CMT. My dilemma comes in the range of > emotions I feel provoked by the telethon. > > As a child, I was quite proud of my MD (which I called > it instead of CMT). My sisters and I always spent > Labor Day weekend running around the neighborhood > raising money for the MDA fishbowl. Today, I feel > somewhat ashamed that I have CMT. The rest of the > year I am fine with it. CMT is a part of who I am. I > don't have to like it and I don't have to hate. I > also feel angry with the MDA with the way they only > show the " worst " cases on the telethon. I would love > to see someone like me, dealing with life the best way > they can. Another feeling that I deal with is a bit > of depression and hopelessness. It seems like there > is so little progress from year to year. > > Do any of you have feelings like this, or am I unique > in this? > > Sorry for the neurotic rambling, > > Thanks for listening, > > Devin Ann > > ===== > Devin Ann son > RevDev45@y... > (602) 253-2837(home) > > " Faith manages! " --Babylon 5 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Lamar son wrote: > > > Devin Ann > Lamar here, > > I have mixed emotions about MDA, but they do help us more than other organizations. Much of the research on CMT has been funded by them. (I know CMTA helps with research also). They do not mention CMT a lot, probably because it is not considered to be life threatening. Lets face it, they are appealing for money. Tragedy is felt by anyone. I have seen that there are some optimistic stories this year on the telethon, but the sad appeals are what brings in the money. > > I helped for years when my health was good, with leading fund raising for a local children's charity. There is a psychology to appealing for donations. They use it. It works. We just need to speak out and make CMT better known as a part of it. > ----- Original Message ----- > From: Devin Ann son > egroups > Sent: Monday, September 04, 2000 01:34 AM > Subject: [] MDA Telethon > > > My Groups | Main Page | Start a new group! > > Hello all, and Happy Labor Day, > > I just wanted to here some feedback on something that > always seems to bother me this time of year. > > As you all know, Labor Day weekend is the MDA > Telethon. I realize the importance of the MDA and am > greatly thankful for the help and support the have > given me in relation to my CMT. I also believe that > through their research there is a possibility for > treatments for CMT. My dilemma comes in the range of > emotions I feel provoked by the telethon. > > As a child, I was quite proud of my MD (which I called > it instead of CMT). My sisters and I always spent > Labor Day weekend running around the neighborhood > raising money for the MDA fishbowl. Today, I feel > somewhat ashamed that I have CMT. The rest of the > year I am fine with it. CMT is a part of who I am. I > don't have to like it and I don't have to hate. I > also feel angry with the MDA with the way they only > show the " worst " cases on the telethon. I would love > to see someone like me, dealing with life the best way > they can. Another feeling that I deal with is a bit > of depression and hopelessness. It seems like there > is so little progress from year to year. > > Do any of you have feelings like this, or am I unique > in this? > > Sorry for the neurotic rambling, > > Thanks for listening, > > Devin Ann > > ===== > Devin Ann son > RevDev45@... > (602) 253-2837(home) > > " Faith manages! " --Babylon 5 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 I too have had depressing feelings about the telethon weekend.My daughter is 15 yrs old and has been diagnosed since age 3. At first I was excited about the telethon weekend, but found that as time went on, the weekend just left me feeling depressed. It's like having all the painful feelings stirred up. I am not hopeless about dealing with my daughter's condition, only saddened at times that she is not able to do everything that others are able to participate in. I try to stay away from the tv and our town fundraising events that weekend. Getting out of town works well. I find that dealing with fund raisers and any other MDA events during other times of the year are no problem. I think that the Labor Day Telethon is just too much in too short a time. It's too concentrated. It's better to have an uplifting weekend for yourself and stay away from the tv. Peace. 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 7:08:56 PM Pacific Daylight Time, Josanfd@... writes: << I too have had depressing feelings about the telethon weekend.My daughter is 15 yrs old and has been diagnosed since age 3. At first I was excited about the telethon weekend, but found that as time went on, the weekend just left me feeling depressed. It's like having all the painful feelings stirred up. I am not hopeless about dealing with my daughter's condition, only saddened at times that she is not able to do everything that others are able to participate in. I try to stay away from the tv and our town fundraising events that weekend. Getting out of town works well. I find that dealing with fund raisers and any other MDA events during other times of the year are no problem. I think that the Labor Day Telethon is just too much in too short a time. It's too concentrated. It's better to have an uplifting weekend for yourself and stay away from the tv. Peace. >> I didn't watch it either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 This brings up an excellent point. The telethon itself may be too intense emotionally for some people. That is understandable. I like the comment Josan made that other fund raising events during the course of the year do not bring on this emotional overload and therefore can be participated in. This is a GREAT way to cope. MDA raises money 12 months during the year, not just in one weekend. Events and programs are ongoing almost every month. There are so many ways to be involved in the fight. If the telethon is too emotional, skip it and find ways to get involved other times of the year. Keep talking about this guys. The more I hear, the better the message I can give about CMT when I have the chance! You guys are great. Ruth >In a message dated 9/4/2000 7:08:56 PM Pacific Daylight Time, >Josanfd@... >writes: > ><< I too have had depressing feelings about the telethon weekend.My >daughter >is > 15 yrs old and has been diagnosed since age 3. At first I was excited >about > the telethon weekend, but found that as time went on, the weekend just >left > me feeling depressed. It's like having all the painful feelings stirred >up. > > I am not hopeless about dealing with my daughter's condition, only >saddened > at times that she is not able to do everything that others are able to > participate in. I try to stay away from the tv and our town fundraising > events that weekend. Getting out of town works well. I find that >dealing > with fund raisers and any other MDA events during other times of the year >are > no problem. I think that the Labor Day Telethon is just too much in too >short > a time. It's too concentrated. It's better to have an uplifting weekend >for > yourself and stay away from the tv. Peace. > >> _________________________________________________________________________ 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 > Devon, > > A few thoughts of my own. First, any feelings you have are legitimate and > should be voiced. Thanks for sharing. > > The goal of the telethon is to raise awareness and to raise money. Let's > face it, research and patient services come with a whopping high price tag > in today's society, and big bucks are needed in the fight. > > I like to think of the groups of diseases covered by MDA in two categories - > life threatening and life altering. > Life threatening means vital organs become invovled and mean premature > death. Life altering means adaptation must be made to accomodate loss of > motor skill and function, but within a near normal life expectancy. > > The primary media focus in any fight against disease will usually be in the > fight against premature death. The diseases that cause death will usually > receive greater coverage. That does not bother me. It does not mean the > other diseases aren't important, but that there is greater urgency to figure > out how to prolong life first. > > I have had many mixed emotions about the telethon just like you. In the > end, I decided to become invovled with the MDA because they are working to > help us out. Our local chapter asked my daughter to be the goodwill > ambassador this year, and they have done a couple profiles on her. By > accepting this duty, we have been able to go out and spread the message > about CMT AND about other neuromuscular diseases, some less devastating than > CMT and some more devastating. > > Do I wish there was another way to get the funding for research and patient > services??? Sure, but what would that be??? Individuals and businesses need > to know WHY they are parting with money when they donate to a cause. > > Keep asking questions and soul searching Devin. It's the only way to find > out answers. > > Ruth > Hi, Ruth. Carolyn here. Thanks for a terrific post! And, again, thanks to you and your daughter!! And - they did it again! $53 million plus.... WOW! Warm regards, Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Dawn, that's a beautiful story. But you've done it now... I made it through the whole telethon this year without crying. That is until I read your post. Isn't it strange how we are often drawn to things without always fully understanding why at first???? I'd love to hear more about your daughter's experiences as an MDA goodwill ambassador. My 10-yr-old does NOT like the on-camera interviews! Her favorite part of the telethon was being a " runner " ; collecting pledge slips and taking them into the back room to be tallied. She is looking forward to being old enough to answer the telephones. Her favorite business visit during the year was to Kerr Drugs Corporate HQ because they let her take as much candy as she wanted! LOL. And, she thinks city council meetings are boring! Ruth >From: " Dawn Pipes " <pipesrd@...> >HI group, > >I thought that I would take the time to tell you about my MDA >experience. > >MDA is a very helpful organization. They have Camp for all of the >children covered within the 43 neuromusclar disease they cover. My >daughter Bethany was a local JR. Goodwill Ambassador for 2 years. >One locally and one state wide. She has gone to Camp for 4 years now >and really looks forward to seeing her friends every year. They help >to cover the AFO's she wears and helped to cover the wheelchair I >use. > >The wierd thing is that when I was 12 years old I started >volunteering for MDA. Sorry, I Love Jerry . I also thought >that >I could help. No member of my family had ever been helped by MDA, >thus me volunteering for the Orgainization was quite wierd. I >continued working as a volunteer thought out my teenage years. When >I >was 22 I had a my beautiful daughter, during the pregnancy I started >having nerve problems. So, I went to a neurologist, he found slow >nerves and was not sure of what he was seeing. > >1.5 years later, Bethany started having walking problem. I took her >to the DR. and he sent me to MDA. My daughter and I both have CMT >1A. >We appreciate everything that MDA does for us. This organization has >always held special place in my heart, and now we all know why. > >Sorry this is so long. It should show you what fate can do. >Dawn > _________________________________________________________________________ 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 6, 2000 Report Share Posted September 6, 2000 HI group, I thought that I would take the time to tell you about my MDA experience. MDA is a very helpful organization. They have Camp for all of the children covered within the 43 neuromusclar disease they cover. My daughter Bethany was a local JR. Goodwill Ambassador for 2 years. One locally and one state wide. She has gone to Camp for 4 years now and really looks forward to seeing her friends every year. They help to cover the AFO's she wears and helped to cover the wheelchair I use. The wierd thing is that when I was 12 years old I started volunteering for MDA. Sorry, I Love Jerry . I also thought that I could help. No member of my family had ever been helped by MDA, thus me volunteering for the Orgainization was quite wierd. I continued working as a volunteer thought out my teenage years. When I was 22 I had a my beautiful daughter, during the pregnancy I started having nerve problems. So, I went to a neurologist, he found slow nerves and was not sure of what he was seeing. 1.5 years later, Bethany started having walking problem. I took her to the DR. and he sent me to MDA. My daughter and I both have CMT 1A. We appreciate everything that MDA does for us. This organization has always held special place in my heart, and now we all know why. Sorry this is so long. It should show you what fate can do. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Hi, Dawn. Thank you for your sensitive post. This is what it's all about, seems to me - getting beyond personalities and into the business of what MDA does for us, and it's a whole, whole lot! Beyond all the hoopla of media, etc., I have a deep respect for Jerry . He could have quit this years ago. He didn't! I am deeply grateful. Thanks again, Carolyn > HI group, > > I thought that I would take the time to tell you about my MDA > experience. > > MDA is a very helpful organization. They have Camp for all of the > children covered within the 43 neuromusclar disease they cover. My > daughter Bethany was a local JR. Goodwill Ambassador for 2 years. > One locally and one state wide. She has gone to Camp for 4 years now > and really looks forward to seeing her friends every year. They help > to cover the AFO's she wears and helped to cover the wheelchair I > use. > > The wierd thing is that when I was 12 years old I started > volunteering for MDA. Sorry, I Love Jerry . I also thought > that > I could help. No member of my family had ever been helped by MDA, > thus me volunteering for the Orgainization was quite wierd. I > continued working as a volunteer thought out my teenage years. When > I > was 22 I had a my beautiful daughter, during the pregnancy I started > having nerve problems. So, I went to a neurologist, he found slow > nerves and was not sure of what he was seeing. > > 1.5 years later, Bethany started having walking problem. I took her > to the DR. and he sent me to MDA. My daughter and I both have CMT > 1A. > We appreciate everything that MDA does for us. This organization has > always held special place in my heart, and now we all know why. > > Sorry this is so long. It should show you what fate can do. > Dawn Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.