Tag Archives: Disease

CMT Awareness Month Challenge

We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.
I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression. Continue reading

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Posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve | Tagged , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

2013 RARE Champion of Hope Community Nominated Awards

The Tribute to Champions of Hope Gala is being held in Newport Beach, CA on September 21st and the Global Genes Project is looking for RARE Champions to be recognized for four special awards nominated by you! Nominations are being accepted April 1st through May 15th. Continue reading

Posted in Charcot-Marie-Tooth disease, Global Genes Project, Health CMT, neuromuscular disease, peripheral neuropathy, RARE Champion of Hope Community Awards, Rare disease day | Tagged , , , , , , , , , , , , | Leave a comment

Preclinical drug trial for CMT1A

ADX71441 has shown efficacy in multiple preclinical models including: CMT1A, Addex is also advancing several preclinical programs including: GABA-BR positive allosteric modulator (PAM) for Charcot-Marie-Tooth (type 1a) disease, spasticity in patients with multiple sclerosis (MS), pain, overactive bladder and other disorders. Continue reading

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Overcoming Depression and Living With Charcot Marie Tooth Disease

Studies show that people who suffer from debilitating diseases tend to have a higher risk of depression. It can be a struggle getting up every day when you have a major medical condition. Despite what the name would seem to indicate, Charcot-Marie-Tooth disease is not a disease of the teeth, but rather a very serious nerve disorder that can make leading a normal life difficult. People who suffer from CMT experience a progressive weakness in the extremities due to a weakening of the nerves. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , , , , | 3 Comments

Take Action For Rare Disease Day!

This will only take a few minutes to get your voice heard! Today, February 29, 2012, is Rare Disease Day.  I just took action to raise awareness in the United States about people with rare diseases! Please take a few … Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy, Rare disease day | Tagged , , , , , , , | 1 Comment

RARE DISEASE DAY IS FEBRUARY 29, 2012

Lundbeck has launched a campaign to raise funds for rare disease day. Simply click the ‘Raise Your Hand’ icon during February, and Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research. Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , | Leave a comment