Finding Experts Health Care Providers for Charcot-Marie-Tooth

by | Mar 6, 2015 | 58 comments

rare_disease_report_imageHNF has a new initiative aimed at identifying expert Health Care Providers (HCP) for the CMT community. We are creating an innovative HCP Directory which provides these clinicians with additional tools to care for their patients. We will provide them with the best standard of practice guidelines, as well as verifying them as a provider to ensure quality diagnosis and treatment to the CMT Community.

Once endorsed by HNF, we will provide these HCP’s with a special logo to add to their website, a link to take a free continuing medical education course and a special Essential Guide Booklet with all they need to know about CMT. A secondary goal of creating the HCP Directory is to encourage their patients to join Global Registry for Inherited Neuropathies (GRIN) so they can collaborate in the research process by accelerating therapy development for the CMT community.

To launch this exciting initiative, HNF recently participated in the Neurological Rare Disease Special Report that was published as a supplement to Neurology Reviews and now available as a digital version under the “Education” tab.

HNF developed a two-paged advertorial describing the diagnosis and treatment for CMT (p. 8-9). The Neurological Rare Disease Special Report was mailed to over 24,000 clinicians, including 20,000 neurologists and 4,000 primary care physicians in the U.S. In addition, this special report will also be distributed from the Neurology Reviews exhibit booth at over 15 major industry conferences. Our goal is to continue to raise disease awareness, inform clinicians of how to recognize CMT, accurately diagnose and finally inform them of future potential treatment options. We will continue to highlight CMT through similar mechanisms and peer reviewed publications.

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Calling Everyone With CMT/IN

HNF has launched a new Patient-Reported Research Study to advance therapies for CMT and inherited neuropathies (IN) in an effort to collect comprehensive data for a better understanding of the disease.

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  1. Skip Lee

    Our son has CMT and has recently developed breathing problems, which we understand to be related. Can you recommend a specialist near Pittsburgh, PA that could be consulted regarding treatment?

  2. Linda Holtzman

    Looking for a Dr. who has any knowledge of CMT in Michigan. I have three children and myself with CMT. We were seeing Dr. Shy but he has moved to Iowa and have not found anyone since.

    • courtney

      Hi Linda,

      Thank you for reaching out! Is the University of Michigan our newest HNF Charcot-Marie-Tooth Centers of Excellence close to you? If so, you can make an appointment with Dr. Sindhu Ramchandren. Please visit for the contact info. Please let me know if you have any more questions.
      Good luck,

  3. Carl Justice

    I have lived all my life with this horrible disease (72 years) and still cannot find a Dr who knows or understands the horrible pain that i have. The pain is getting worse day by day. I have one of the worst cases that I have. The physicians in my area do not even know or understand or have any consideration of the situation that I have to live in daily. Don’t come to WV for any help, there is none.

    • Terry Fralick

      Hi I’m just reading this now. I too as many suffer occasionally with the pain and it’s severe. Some have dislocated joint with it. I found my accident that muscle relaxants like Flexeril 5-10 mg stop the contractions so you don’t have the pain, it usually comes more in cold weather pulse still manage to work cuz I got it later. My doctor left so now I have a snooty foreign doctor that leaves me without pain meds. I still have some but suspected she would do that. They put it in a catagory as not to take all the time, I don’t as most take it all the time but when I have a sudden attack which is only at rest usually after work I shouldn’t be doing but can’t afford to quit yet,

  4. Linda Fournell

    Need to find pediatric Dr. In Orange County CA who really understands CMT. My daughters pediatrician very leary to treat her for anything as he has no knowledge of disease and when I contact her neurologist at CHOC with concerns I get told to take her to her pediatrician. Very frustrating as I know things are going on w/my child but nobody wants to address them.

  5. Kim Lee

    Looking for a doctor with knowledge about CMT 2A2.

    • Allison Moore

      Hi Kim, Can you please advise us where you live so we can suggest a list of doctors in your area. Is there something in particular you are looking for, a good PT, Orthotist, etc.?

      • Kim

        We live in Arkansas. We are currently seeing a doctor that at least knows of the disease. Just would like to find someone somewhere that is more knowledgable about type 2A2. We have a good PT but just don’t know what to expect from the disease.

        • Charley long

          Looking for a doctor in the Knoxville, Tennessee area specializing in CMT.

  6. Lori Graff

    I need to find a dr knowledgable in CMT. I live in the Birmingham area of Alabama. I can’t find anyone to help me. Thank you.

  7. vini just

    Is there a neurologist in Naples, Florida that specializes in CMT? If so, who?

  8. Mary jane brown

    My husband needs a Dr qualified to treat cmt. No one where we ,live even understands the complexities of this horrible disease. All we hear is “there is nothing we can do”. Please help.

  9. greg zaino

    i have cmt all hands, feet, lungs leg weakness and back, I read on the internet dailey and found Dr. Eva fledman along with mass generl ,boston, genzyme,neuralstem inc., reneuron ,univeristy of michigan are and have done work on als which is more extreme than cmt maybe everyone can reach out to them for cmt .They are using stem cells in positve way!!!!!!!!!!!!!!!! any feed back would be great hope is not a plan keep diging for info to share gpz 4 15 15

  10. tracie

    I would like to know c who would become e a good neurologist in South, Central VA

  11. Sherry Chase

    I used to see Dr Wayne at a MDA clinic in Johnson City Tn. Due to funding it was cut. I then saw Dr. Wiseman at MDA clinic in Knoxville Tn. He retired. I know there is a clinic at Vanderbilt University in Nashville Tn. Its a 7 hr drive. Looking for neurologist in or near Kingsport Tn. That knows about Charcot Marie Tooth.

  12. Christeen Moffett-Kerin

    will you also be including medical doctors and specialists from Australia?

    • courtney

      Yes, we hope to have doctors all over the world. Please keep checking back for updates.

  13. Linda Hill

    I had been looking for a neurologist who knew enough about CMT to be able to treat me competently. I didn’t want to have to go to the Neurology Foundation in Providence, RI, because of the stress of getting there and finding parking. A CMT recommended Dr. Eric Szabados of Cranston, RI. She is extremely compassionate, taking the time to listen, ask pertinent questions, and treat me as a person, not just a CMT case. I have found many neurologists to be condescending, but she is totally the opposite. I’m very particular about the doctors I see and Dr. S is a keeper. She is at 725 Reservoir Av e., Cranston, RI 02910 and the telephone number is 401-944-9559.

  14. Lindsay McMillan

    Looking for a doctor in the Southeast to do a full work up for CMT. I was diagnosed several years ago, but do not feel like my doctors here fully understand my health issues.

    • Rebecca Lauriault

      Lindsay Mcmillan, where in the Southeast do you live. Greenville SC has a good dr. I can recommend for CMT. Emory univ. also has a good group of docs in Atlanta.

      • yvonne peterson

        Where in Atlanta did you find the good CMT doctors? If you can give me any names, that would be very helpful. We are also seeking an OT and a PT who know CMT for our 7 year old whose weakness is getting worse, so any info would be very helpful. Thanks!

      • Tracy Roberts

        My name is Tracy and I have CMT. Do you have the name of a good CMT Dr in SC?

      • Tina Walker

        Hi Rebecca. My husband has (54) has had CMT since about 8 or 9. We live in Greenville, SC and would love the name of the doctor you could recommend for here.

        • Jill

          Hi Tina,
          I also live in Greenville and would appreciate your recommendation!

      • Tracy Roberts

        MUSC in Charleston also has a good diagnostic Dr (Katherine) for CMT and another neurologist who works with CMT patients. I have only seen the latter Dr. once but she did know a heck of lot more regarding bracing, physical therapy and general quality of life concerns. They will do genetic testing also however Medicare doesn’t cover it.

      • Sharon Goodrich

        Do you have names of CMT specialists in
        Greenville SC or anywhere in the southeast ?
        I am in Charlotte and can travel.

      • Stephanie

        Rebecca, who is the Dr. in Greenville that you recommend? My 80 yr old mother was recently diagnosed and they live approx 1hr of there.

      • Priscilla Skelton

        I know this is a few years after you submitted your email. I live in MS where we have no specialists in CMT. My daughter lives in Atlanta and I found only one doctor who sees CMT patients at Emory and she is booked till July 2019. Please, if you know of any other doctor to see please notify me because I can fly anywhere! Thank you.

      • Brent Henke

        My name is Brent and I suffer from CMT and I’m looking for help. The doctors I’ve seen don’t understand CMT.
        Can you provide Dr name at Emory in Atlanta?

        Any info is greatly appreciated.


    • Michell Oliver

      I am from Alabama. My 42 year old daughter has been diagnosed with CMT. Now that we have researched it, I have come to realize no doctor here in Dothan know little about it. Have you found anyone?

      • Laquandria Harris

        Hi I live in Alabama and I have CMT, have you found anyone?

  15. John Axner

    I have CMT. I suspected it due to my foot symptoms which include foot drop, high
    upper feet , flat feet and foot drop. Also my hands are weakening. I was diagnosed
    at age 60. My mother and grandmother had the disease. I am a retired police officer
    and the disease effected my job performance but I did not put 2 and 2 together until
    after I retired. I found a neurologist who tested me electrostatically and confirmed my
    suspicions. I have leg braces and have joined a gym to loose weight and do some therapy.
    Are there some therapeutic exercises HNF can recommend?

    • Erica

      My mother is 56, she was diagnosised with CMT when she was 40, she started off walking with a cane, she had one hip replacement and both knees replaced. She has foot drop, hammer toes, both feet turn in, she can not drive, she has lost all of her independence. She is getting worse now, she is now using foot braces and uses a rolling walker to get around. She cannot stand or walk on her own without the support of her braces and walker. I have been exploring surgeries to help correct and or slow down the CMT from getting worse. We would really like to find a CMT specialist in NJ or NY. If anyone has any information kindly reply back. Thank you.

      • Vickie oneto

        CMT doctor in Florida?

      • Tamara Harrison

        You should take her to the NIH but the best drs are in Ca @ Cedars Sinai

    • Terry

      Hi It went the same with me so had to downgrade to less pay doing something else in med field can’t afford to quit just in my case.
      Only thing I got was PT. U have to be careful though with cmt. U do too much it will damag more nerves. I’ve tripped twice because of work sparing my foot plus another broken toe and soaring foot. Also gym advice was a joke, I found the stationary bikes with not too much resistance helps. Cmt adobes is usually ligh balance type exercises but us with a more physical or athletic past doesn’t seem to do much. Also stretching exercises because of contracture’s if you ever had them ligament pulling 10 plus pain mon relenting till you can get something warm on you and will keep feet from atrophy better by stretching exercises and bubbly type foot water therapy. I have have braces but only use one at a time to prevent atrophy of feet from being immobilized less I plan to walk a long distance like a mall or something where I almost got run over a few times or mistaken for being drunk because of poor balance lol

    • Jerry Dowse

      My situation mirrors yous,I would like to talk to you about CMT
      [email protected]


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