AM2021 News Story

Contacting your hometown media and getting them to feature a story about someone with CMT or a CMTA event occurring in September is a great way to get CMT and the CMTA in the news during CMT Awareness Month.

Feature/health reporters are always looking for good human interest stories, and it’s usually easy to find their contact information on the websites of local TV and radio stations, community newspapers, etc. Many will also provide guidelines for submitting stories and information about events, and the sample press release below will also make it easy to get started.

You can copy and paste it from this webpage, or you can download it as a MS Word doc. Then just replace the text in red with your information:

  1. Begin by providing contact information: name, email and phone.
  2. In first paragraph fill in the name of your city or town and then Google it to find its population. Divide the population by 2500 to find the approximate number of people who have the disease in your city or town, and fill that in.
  3. If an event or activity is being held, fill in the location of the event in the last paragraph and talk about what participants will be doing for Awareness Month.

For immediate release
For more information, contact: name/email/phone

CMT Awareness Month Kicks Off September 1;
Devastating Disease Affects One in 2,500

Your city, State—One in 2,500 people—3 million people worldwide—have the degenerative neuromuscular disease Charcot-Marie-Tooth and many of them don’t even know it. That means that in our town alone, population of city divided by 2500 people have the disease. And that’s why the Charcot-Marie-Tooth Association is kicking off CMT Awareness Month September 1: to make the public aware of the symptoms of CMT so that those with the condition can be identified for early treatment.

Charcot-Marie-Tooth is a progressive disorder of the peripheral nerves that causes people to lose the normal use of their feet and legs. Symptoms include: foot deformity (very high arched feet) and foot drop (inability to hold foot horizontal); a slapping gait (feet slap on the floor when walking because of foot drop); loss of muscle in the lower legs, leading to skinny calves; numbness in the feet; and difficulty with balance. Hands and arms may also be affected.

The CMTA is a patient-led nonprofit whose mission is to cure this incurable disease. It does so with an aggressive, multipronged attack on the disease, bringing together a group of top-flight researchers and experts and directly funding their work. The CMTA launched the Strategy to Accelerate Research, or CMTA-STAR, in 2008 to capitalize on breakthroughs in genetics and dramatically speed up the pace of CMT research. Since then, the CMTA-STAR Initiative has made great strides toward developing treatments for CMT.

Throughout the month of September CMT patients will be walking, biking and swimming in support of STAR. The CMTA will share videos of patients in the news and interviews with five of our research partners. Participants are also urged to share their stories live on Facebook and to buy a $5 STAR for their CMT STAR.

In location of walk or event, the participants will be walking, cycling, swimming, etc.. For more information, visit