Tag Archives: Support group

Spreading Awareness One Person at a Time

At the CMTA support group leader conference in Chicago, a speaker encouraged us to tell at least one person each day about Charcot-Marie-Tooth (CMT) disorder. Thereby, spreading awareness of this disease, which affects an estimated 5 million people worldwide, and yet most have never heard of. Today, while getting an ultrasound of my spleen, four more people learned about CMT. Continue reading

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Profiles in CMT: Interview with Christine A. Hook

Christine A. Hook’s Interview with Melinda Lang

You recently received an award from the CMTA, tell us about your award and how you were nominated.

Yes, I recently received the National ‘I am a STAR’ award, for everything I have tried to do to raise awareness of CMT, and money for research…through the CMT blog, Grace Lines, I write, and the Art de Cure gallery I co-coordinate, which benefits the CMTA. My parents nominated me for the award, and I’m still shocked that the CMTA chose me. It’s a great honor! Continue reading

Posted in Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories, STAR | Tagged , , , , , , , | 6 Comments

Upstate NY CMT exhibit at The American Pain Foundation community event

by Melinda Lang, Rph The APF together with Albany Medical Center presented a free community event “Getting the Help YOU Deserve for Chronic Pain,” at the Hilton Garden Inn in Troy, New York on Saturday, October 15. This free event, … Continue reading

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“What CMT Means To Me”

by Melinda Lang CMT means sometimes I start my day by getting our of bed, tripping over my feet, and falling on my face. CMT means to me that I found new friends after starting a local support group. CMT … Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged , , , , , | 4 Comments

Am I physically challenged, incapacitated, disabled or just broken?

When a representative of the Charcot-Marie-Tooth Association visited our support group, he said, “Whenever I speak to CMT groups, I ask how many think of themselves as disabled.” He finds very few raise their hand. He went on to say, … Continue reading

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Advocacy and Outreach News

Why do I believe so strongly in CMT advocacy, awareness and outreach? Because my mission as founder & facilitator of the Upstate NY CMT Support & Action group is to improve the lives of people with CMT and I can’t … Continue reading

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