Welcome! You're not alone.

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


1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Need a Doctor or Specialist?

Blog Posts

Local Fundraiser for Ben's Friends

Posted by Scott Orn on March 22, 2015 at 10:19am 0 Comments

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends."

It was a big success as we…


Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.




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.


There are no birthdays today

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
5. No specific doctor or hospital name mentioned in a negative context, for legal reasons.  
Specific doctor or hospital names in a positive context are welcome.
6. No sharing of members' posts to other sites without their express permission.
7. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.

Gift Store


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.


muscular dystrophy/cmt

Started by mrmustard in General 2 hours ago. 0 Replies

Im not sure if it really matters at this point in my life(57yrs old)but I wonder if cmt is under the umbrella of M.D.,I  heard now there are studies to the contrary,anyone have insight to this?Continue

What are you looking forward to, now that the weather is warming?

Started by SK in General. Last reply by SK 8 hours ago. 10 Replies

Being able to lose at least one layer of clothing has great appeal to me, being able to get out to the nursery to shop for new flowers and shrubs to plant with the grandkids, and just being able to open the windows will be a wonderful change! I look…Continue


Started by Shawna in General. Last reply by freeway 13 hours ago. 6 Replies

Has anyone had an ankle fusion or TTC fusion? I am looking for some input. Please and Thank You

Thanks for the add

Started by Debra in General. Last reply by Debra on Tuesday. 5 Replies

Thanks for adding me to your group. I'm 49, from Ashland, Ky, have CMT1a. Was diagnosed in 2010. My father had CMT and I grew up knowing all about the disease. I recently left my job as a full time Fedex Express driver. Unfortunately my body just…Continue

Mobile App and E-Book Available for Download!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

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.

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!
2. Upload pictures and videos easily.
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.

This community is brought to you by http://bensfriends.org/

Latest Activity

mrmustard posted a discussion

muscular dystrophy/cmt

Im not sure if it really matters at this point in my life(57yrs old)but I wonder if cmt is under…See More
2 hours ago

braylin's gramma left a comment for fran
"Hi fran, we're glad you're here!"
7 hours ago

SK replied to SK's discussion What are you looking forward to, now that the weather is warming?
"Hi Writes-a-lot,  My husband built us raised beds with landscaping timbers, filled in with…"
8 hours ago

Writes-A-Lot and CoolMommaDucky are now friends
9 hours ago

Writes-A-Lot replied to SK's discussion What are you looking forward to, now that the weather is warming?
"I love, love, love being outside and working in the garden. However, I cannot get up off the ground…"
9 hours ago

SK left a comment for fran
"Hello Fran, welcome to the group! This is a good place for info and support and making new friends,…"
9 hours ago
Profile Iconfran and freeway joined Charcot Marie Tooth (CMT) - Online Support Group
9 hours ago

braylin's gramma left a comment for freeway
"Hi freeway, we're glad you're here. We hope you make a lot of new friends."
12 hours ago

Top Content 

1 What is your muscle relaxant of choice?

What is your muscle relaxant of choice?

Posted by SK on February 28, 2015

2 If you went through genetic testing, which tests were done?

If you went through genetic testing, which tests were done?

Posted by SK on March 14, 2015

3 Surgery


Posted by Shawna on March 21, 2015

4 What are you looking forward to, now that the weather is warming?

What are you looking forward to, now that the weather is warming?

Posted by SK on March 26, 2015

5 Thanks for the add

Thanks for the add

Posted by Debra on March 23, 2015


Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support LivingwithCMT.org, Click an Ad. Or Two.

Join Ben's Friends

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

CMT Support is a peer-to-peer network

To get support, give support.




BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.


© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service