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Blog Posts

Ben's Friends Monthly Newsletter - November 2014 Issue

Posted by Ben Munoz on November 27, 2014 at 8:38pm 0 Comments

Just the Stats:

Communities: 38

Friends: 44,000+


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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 Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

(Co-Founder of Ben's Friend)

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.


Sorry for my absence!

Started by SK in General. Last reply by braylin's gramma yesterday. 2 Replies

I know I've been gone for a couple of months, without warning, and I apologize to each and every one of you. There's been a lot going on, all long stories, all up-hill climbs...My daughter-in-law finally had her surgery yesterday, and NO cancer was…Continue

Pain Medication

Started by Dinga in General. Last reply by CoolMommaDucky yesterday. 1 Reply

http://http://nootriment.com/agmatine-sulfate/ I just wanted to share with you something we are trying that seems to be helping, so far nothing else has. My husband Mick…Continue


Started by Alison in General. Last reply by Barbs on Tuesday. 1 Reply

Hi every1 I'm Alison from the uk. And have cmt1 was diagnosed at an early age. My 2 children also have it. I also have bouts of depression not completely down to cmt. Although I have deteriorated significantly the past year and a half. And feel…Continue

Hello and a question

Started by Sammy in General. Last reply by Sammy on Monday. 5 Replies

Hi AllI just came across this group yesterday and I was delighted to find it as I don't  know anyone else with my condition.I have CMT 4c and battle with balance and walking.I have always felt ambivalent about having kids however recently I am more…Continue

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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

adb1x1 and CoolMommaDucky are now friends
16 hours ago
Scott Orn left a comment for Dinga
"Huge welcome Dinga! One tip, if you have specific questions it's best to start a New…"
Scott Orn left a comment for Abbe Panzer
"big welcome Abbe! One tip, if you have specific questions it's best to start a New Discussion…"

braylin's gramma replied to SK's discussion Sorry for my absence!
"Hiiiii!!!! I have been concerned about you. Asked everyone I knew here "were's SK?"…"

braylin's gramma liked SK's discussion Sorry for my absence!

braylin's gramma left a comment for Abbe Panzer
"Welcome Abbe, we are glad you're here! Hope you make a lot of new friends."

dancermom left a comment for Abbe Panzer
"Welcome, Abbe, to this supportive community. Feel free to open a discussion to introduce yourself…"
Abbe Panzer is now a member of Charcot Marie Tooth (CMT) - Online Support Group

Top Content 

1 Hello Everyone!

Hello Everyone!

Posted by Jesse Burch on January 16, 2015

2 CMT And Driving

CMT And Driving

Posted by Barbs on January 9, 2015

3 Hello and a question

Hello and a question

Posted by Sammy on January 21, 2015

4 New here

New here

Posted by Lyric1217 on January 17, 2015

5 Sorry for my absence!

Sorry for my absence!

Posted by SK on January 29, 2015


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