Allison Moore founded HNF in 2001 in an effort to improve the quality of life for people with Charcot-Marie-Tooth. She spearheaded the foundation after a hospital mishap where she was treated with medications that exacerbated her CMT symptoms and made her legs weak and imbalanced. Her goal was to create a foundation that would lead to the development of treatments and a cure for CMT, and increase awareness so the world would recognize CMT as a household name.
HNF has made great strides in building awareness and research funds for CMT, but Moore was not content to rest on this success. This year, she decided it was time to create and lead an event dedicated to putting the CMT patient in the spotlight.
The first Patient-Centered Charcot-Marie-Tooth Summit is a tremendous step in bringing global awareness among CMT patients, caregivers, researchers, and health care professionals.
Allison wanted to share this message for those attending this landmark event:
“My goal for EVERY patient coming to the Summit is to walk away with HOPE. Have hope for treatments. Hope that a safe place to voice their concerns exists. Hope that HNF is here to help CMT patients and their families. Hope that HNF is their voice and advocate for a better future.
I also want all stakeholders to feel confident that HNF is backing their efforts, research initiatives, HCP education and awareness, and that we know the gaps and are actively working to fill them.
Each of us need to tell our story. CMT deserves attention NOW.”
Watch these videos and learn more about Allison’s story and how HNF is leading the way in finding a cure for CMT!