Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 << I found out yesterday that CMT is considered one of 40 different types of muscular dystrophy. This amazes me for a number of reasons. First, that with all my searching for info on what CMT is and, more importantly, how to treat it, that no one knew this information. >> You realize of course that CMT is an atrophy, not a dystrophy. MDA has included us under their umbrella because we have a neuromuscular disease, not because CMT is actually relalated in any way to Muscular Dystrophy. They are not related. In addition to the MDA is the The Muscular Dystrophy Family Foundation. Because of limitations imposed by private insurers, Medicare, Medicaid and reduced funding available through other funding sources, requests for our assistance from throughout the United States have increased greatly each year. Our goal is to meet as many of those needs as funding will allow. We want your families to know they have a choice in service providers. While the larger, better known MDA agencies are cutting back on equipment requests to concentrate more on research, the Muscular Dystrophy Family Foundation concentrates ONLY on providing adaptive equipment. We believe research is extremely important, we also believe it is equally important to have the equipment available to live each day to the fullest. We are available to help. Please keep in mind, we are NOT an international organization ... yet. Families and adults with MD can reach us at: 1- E-mail: mdff@... http://www.mdff.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Hi! Is this from Larry who posted the same comment on the CMTA discussion board? If so, I left a lengthy response there. (My friends here at CMTUS know by now I usually have a lengthy response...) Anyway, I basically said what others here posted. CMT is NOT a muscular dystrophy, but rather a muscle atrophy caused by a disease of the peripheral nerve. MDA covers 40 NEUROMUSCULAR diseases. CMT is just one of those diseases. They can indeed help you with treatment and finacial assistance for the basic services they provide. See my response to you on the CMTA board for more detail. Glad you found us here and hope you post often! Ruth >From: LMinella@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: CMTand MDA >Date: 1 Feb 2000 21:20:12 -0000 > >From: LMinella@... > >I found out yesterday that CMT is considered one of 40 different types of >muscular dystrophy. This amazes me for a number of reasons. First, that >with all my searching for info on what CMT is and, more importantly, how to >treat it, that no one knew this information. Secondly, that there might be >financial aid for the treatment thru the MDA for folks like myself who have >no insurance to pay for all the medical bills. Any comments? > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 LMinella wrote--<> CMT, I'm happy to state, is not (repeat not) a form of Muscular Dystrophy. It is considered " RELATED " to M.D. because it is a neuromuscular disease, like M.D. There are over 40 neuromuscular diseases, all RELATED to M.D., but not a form of it. This, in itself, is good news, as CMT is not life-threatening, as M.D, is. There are various forms of muscular dystrophy, broken down into different classifications, such as Duchenne, or Becker M. D. I sent this out as soon as I read your post, because I know how upsetting it can be to think you have a form of M.D. Hope I made myself clear. Theresa ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 In a message dated 2/1/00 2:57:26 PM Pacific Standard Time, benember@... writes: << I sent this out as soon as I read your post, because I know how upsetting it can be to think you have a form of M.D. Hope I made myself clear. Theresa >> I tell people that I have M.D sometimes. They unerstand the M.D better. Call it what ever I say <------Dx with what ever in the early 70's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 I thought every one new that mda was there for us CMTer's too, I'am 36 now and have been going to the MDA clinic once a year since I was 17, they have done every thing for me including AFO's and hand surgery, dont know what I would do without them. Tony. CMTand MDA >From: LMinella@... > >I found out yesterday that CMT is considered one of 40 different types of muscular dystrophy. This amazes me for a number of reasons. First, that with all my searching for info on what CMT is and, more importantly, how to treat it, that no one knew this information. Secondly, that there might be financial aid for the treatment thru the MDA for folks like myself who have no insurance to pay for all the medical bills. Any comments? > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 , You probably can imagine my great anticipation for being evaluated by the MDA. I've already gotten an appointment to see them. You and others are really singing their praises, so I am guardedly optimistic. Thanks for your input! Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 CMT isn't actually a form of Muscular Dystrophy, but it is covered under the MDA. I, myself am a member of the MDA. The first thing you have to do is find an MDA-affiliated clinic near you, which you can get from the website at the MDA, or I have all the information, and if you let me know what city you live in, I can get one for you. You need to make an appt. there, and they will evaluate you, and then, you're a member of the MDA. The only thing you need is one of their forms, signed by a MDA doctor, saying what it is precisely that you have. It's easy once you go to the clinic. The MDA website has the best information on CMT that I've found so far, http://www.mdausa.org. You can get everything you need from the website, and in case that doesn't work, here's the address and phone number; MUSCULAR DYSTROPHY ASSOCIATION National Headquarters 3300 East Sunrise Drive Tucson, AZ 85718-3208 I personally, can't sing their praises enough. samantha __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Hi, . Marc here. I am very much in need of MDA information. I live in Blocksburg, CA - a tiny town of 300 in the mountains - which is in Humboldt County. The nearest major town is Eureka. I am seeing a neurologist there named Osborn - in fact, I have an appointment today at 2:15 - but his knowledge of CMT and options available for managing it seems so limited... Anything you can find would be a Godsend. If you could find anything in the next hour, that would be miraculous!! Thanks for your help. M Re: CMTand MDA > > > CMT isn't actually a form of Muscular Dystrophy, but > it is covered under the MDA. I, myself am a member of > the MDA. > > The first thing you have to do is find an > MDA-affiliated clinic near you, which you can get from > the website at the MDA, or I have all the information, > and if you let me know what city you live in, I can > get one for you. > > You need to make an appt. there, and they will > evaluate you, and then, you're a member of the MDA. > The only thing you need is one of their forms, signed > by a MDA doctor, saying what it is precisely that you > have. It's easy once you go to the clinic. The MDA > website has the best information on CMT that I've > found so far, http://www.mdausa.org. > > You can get everything you need from the website, and > in case that doesn't work, here's the address and > phone number; > > MUSCULAR DYSTROPHY ASSOCIATION > National Headquarters > 3300 East Sunrise Drive > Tucson, AZ 85718-3208 > > > I personally, can't sing their praises enough. > > samantha > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Okay, here goes; CALIFORNIA; DOWNEY Rancho Los Amigos Hospital FRESNO Valley Children's Hospital LOMA LINDA Loma University Medical Center ORANGE Children's Hospital Of Orange County SACRAMENTO University of CA at /Sacremento Medical Center SAN DIEGO Children's Hospital SAN JOSE Santa Clara Valley Medical Center SANTA BARBARA Santa Barbara Cottage Hospital VISALIA Kaweah Delta District Hospital These are the MDA/ALS Centers; LOS ANGELES University of CA, Los Angeles The Hospital of the Good Samaritan/ USC Nueromuscular Center Cedars-Sinai Medical Center SAN FRANCISCO CA Pacific Medical Center I would truly recommend that you call them or write them, they'll help you with everything you need. MUSCULAR DYSTROPHY ASSOCIATION National Headquarters 3300 East Sunrise Drive Tucson, AZ 85718-3208 at http://www.mdausa.org All you have to is make an appt., and they'll help you with everything you need. I went to the University Of Minnesota-Minneapolis Medical Center, and they took care of everything for me, and they were (and still are) the nicest people I've ever met. They're so kind and understanding. If you can't make it in, or make an appt., just let me know, and I can call someone I know for you, or email me at svanlaarhoven@..., and I can give you her number, whatever it is you're more comfortable with doing. I'm willing to help. Just let me know, ;-) __________________________________________________ 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.