Did you know?
Charcot-Marie-Tooth disease is the most commonly inherited peripheral nerve disorder, and affects about 2.8 million people worldwide.
If you walked up to a group of people in your town, your city, your school, or your neighborhood…and asked them if they ever heard about MS, the majority would say “Yes.”
Now ask them if they ever heard about CMT…the majority would say “What?”
Even though the incidence of CMT is greater than that of MS, CMT goes largely unrecognized. Patients go years without a proper diagnosis, HCPs don’t have the knowledge to help, and researchers are faced with limited information to develop drug therapies and clinical trials for CMT patients.
It’s more important than ever to keep pushing the boundaries of raising awareness within the CMT patient and HCP communities. Without awareness, we don’t have a voice.
And this Summit speaker has something to say.
Robert Moore, husband to Allison Moore, CEO and Founder of HNF, will be discussing the challenges of disease state awareness at the Patient-Centered Charcot-Marie-Tooth Summit.
Let’s hear more from Robert:
HNF: Why did you choose your particular topic for the Summit?
The biggest challenge for those living with CMT is bringing awareness of their CMT symptoms to their HCPs. I’ve seen Allison go through countless visits with medical professionals that only dismissed her symptoms. By raising awareness of the disease to the medical community, patients will have a fighting chance to get diagnosed quickly and correctly.
HNF: How has CMT affected your life?
Watching Allison have trouble walking, or performing simple tasks such as buttoning a shirt or opening a bottle, has given me a very different perspective for anyone living with a chronic debilitating disease. She walks with leg braces, but will still suffer frequent falls, often resulting in broken bones, and sometimes a broken spirit.
But that has not slowed Allison down at all! She is a remarkable force of determination, persistence, and strength.
HNF: What do you hope attendees take away from the Summit?
I hope attendees take away a renewed sense of commitment to raising CMT awareness. Whether it’s as a patient, caregiver, or HCP, let’s make a promise to be 100% committed to meeting the CMT awareness challenge head on!