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If your family has been affected by Charcot Marie Tooth, consider Charcot Marie Tooth Support Network second home.

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Blog Posts

Never give up

Posted by Armando Abrero on April 11, 2014 at 5:46pm 1 Comment

Just wanted to share this inspiring video.

Laugh often. Love a lot. Be strong. Never give up.…

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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

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Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Ben's Friends Now a Non-Profit 501(c)(3) Organization

We're pleased to announce that Ben’s Friends is now officially approved by the IRS as a 501(c)(3) non-profit.
     This enables all donations to be tax deductible (starting with any made from July 2013), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google Ads credits).
     This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.
     Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this difficult process. Now the real work can begin!
     If anyone has any ties to grants, foundations, or partners who can help 501(c)(3) organizations, or if you have any past experience writing grant applications, please email us at partners@bensfriends.org

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Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Welcome to LivingWithCMT.org!

If you or a loved one has been affected by Charcot-Marie-Tooth (CMT) also known as Hereditary Motor and Sensory Neuropathy (HMSN), this is the place for you. The purpose of our community is to provide patients, families and friends affected with CMT/HMSN a place to find support, information, and most importantly a place to connect! Please feel free to suggest new ideas, because this is YOUR community.

What is Charcot-Marie-Tooth?

Charcot-Marie-Tooth (CMT) is a rare, inherited, neurological disorder which affects the nerves, resulting to loss of muscle and touch sensation. CMT affects the feet, legs, hands and arms.

Charcot-Marie-Tooth (CMT)  is a genetically and clinically heterogeneous group of inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. CMT disease is one of the most common inherited neurological disorders affecting approximately 1 in 2,500 people equating to approximately 23,000 people in the United Kingdom and 125,000 people in the USA.

Allow this community to become a part of your life. . .

1. Share your story on "My Page" and personalize it to reflect who you are!
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3. Start a new discussion on "Forum" or contribute to existing discussions.
4. Welcome our new members with a comment on their page!

*Please keep in mind this site is not intended to diagnose, prescribe, or replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your healthcare with guidance of healthcare professionals.

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Forum

You may be interested in the type of shoes I wear!

Started by SK in General 10 minutes ago. 0 Replies

No, they are not the type to make you gasp over their beauty, but they may help keep you on your feet, they have a bar in the sole that help keep your foot from turning to the side.  Instead of indenting in the center, they are basically the same…Continue

Anyone have a favorite spring bloom?

Started by SK in General. Last reply by SK 16 minutes ago. 6 Replies

Could it be Lilacs, Cherry blossoms, Daffodils, Magnolias, Dogwoods, Crepe Myrtles, the Lily, Crocus>As difficult as it is to choose one, I have always loved the wild violets of Spring?What are your favorites?Continue

What is your biggest challenge of CMT?

Started by SK in General. Last reply by SK 9 hours ago. 4 Replies

As I learn what I can about CMT, please tell me what you consider to be most challenging.  Wishing you well,SK Continue

Has anyone tried the 'hurrycane'?

Started by SK in General. Last reply by SK 9 hours ago. 7 Replies

You may have seen it on tv, I've been thinking of getting one for my mom, and I may not be too far behind on my own purchase!  Just wondering if you've tried it or what your thoughts may be!…Continue

Latest Activity


Moderator
SK's discussion was featured

You may be interested in the type of shoes I wear!

No, they are not the type to make you gasp over their beauty, but they may help keep you on your…See More
9 minutes ago

Moderator
SK posted discussions
10 minutes ago

Moderator
SK replied to SK's discussion Anyone have a favorite spring bloom?
"Oh, I saw that you got blasted again!  I was complaining about pouring rain, sleet and a few…"
16 minutes ago
braylin's gramma replied to SK's discussion Anyone have a favorite spring bloom?
"I love Lilacs, I am concerned that we may not see them this year as it won't quit snowing in…"
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tga and SK are now friends
5 hours ago

Moderator
SK replied to SK's discussion Anyone have a favorite spring bloom?
"Oh yes, azaleas!  But you know, the winters get them here!  Guess maybe I should have…"
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SK replied to SK's discussion Anyone have a favorite spring bloom?
8 hours ago
evanlynn13 liked SK's discussion Anyone have a favorite spring bloom?
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Top Content 

1 Looking for advice

Looking for advice

Posted by M Hanlon on March 27, 2014

2 How long did it take you to get a diagnosis, or are you still waiting?

How long did it take you to get a diagnosis, or are you still waiting?

Posted by SK on April 5, 2014

3 Has anyone tried the 'hurrycane'?

Has anyone tried the 'hurrycane'?

Posted by SK on April 15, 2014

4 Anyone have a favorite spring bloom?

Anyone have a favorite spring bloom?

Posted by SK on April 16, 2014

5 Has physical or occupational therapy benefited anyone?

Has physical or occupational therapy benefited anyone?

Posted by SK on April 14, 2014

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"Thank you for the welcome and yes I am a member of the EM community, I am MsLovelyNikki there."

“Thank you for the welcome and yes I am a member of the EM community, I am MsLovelyNikki there.”

- a member from Charcot Marie Tooth (CMT) - Online Support Group
 
 
 

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