Founder, CEO | [email protected]
Allison Moore founded HNF in 2001 in an effort to improve the quality of life for people with Charcot-Marie-Tooth. She divides her time between her homes in Manhattan and Amagansett, NY, with her husband, Robert, and her two young sons.
Moore founded HNF in 2001 after a hospital mishap in which 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 increased awareness so the world would recognize CMT as a household name.
Executive Director | [email protected]
Courtney joined HNF in February 2012 to assist with fundraising, database management, and financial reporting. In addition, Courtney provides support to our many fundraising event coordinators and to the growing membership of Team CMT. Finally, she manages social media outreach for HNF. Familiar with the effects of CMT on members of her own family, Courtney has seen first-hand the importance of raising awareness about this disorder. She shares our goal to create a supportive community for those living with CMT.
Courtney earned her B.S. from Salve Regina University in Rhode Island. Her experience in database management and special education makes her a wonderful asset to HNF. A married mom of three children, Courtney enjoys going to the beach with her family and traveling.
Cherie joined HNF in July 2013 as our Accounting Manager. She comes to us with a wealth of experience both in the corporate and non-profit sector. Cherie earned her BB.A. in Marketing Communications from Mary Baldwin College. She shares our passion to help all that suffer with Charcot-Marie-Tooth. A married mom of two children, Cherie enjoys yoga and traveling with her family.
Social Media Coordinator
Bernadette (Berns) comes to HNF with a wealth of knowledge about Charcot-Marie-Tooth (CMT). She plans to assist HNF with social media and interact daily with patients and family members that are affected by CMT. She is a Certified Personal Trainer and received her certification from the National Personal Training Institute (NPTI) but had to halt training due to CMT. She also worked for her family business Cuz N’ Company Salon and Spa that her dad started 30 years ago and took on many roles throughout the years.
In addition she worked in the community as a teacher’s aide for Family Support Services. Berns is the star of the “Bernadette Documentary” which follows her journey with CMT. She is social media guru and is looking forward to continue the upward growth of HNF’s social media. Bern resides in Drexel Hill, PA and enjoys spending time with her family and dogs.
CMT Advocacy Director
Joy joined HNF in February 2015 to focus on the growth of HNF’s online patient support community as a CMT Advocacy Director. Joy and her husband, Toby, live in Seattle, WA, with their beloved yellow lab, Charley. While food service distribution was her career; finding a treatment for CMT, traveling and cooking are her passions. You may remember her food blog, www.apassionateplate.com.
The diagnosis of CMT came when Joy was a teenager, after years of trips and falls and sprained ankles. Her mom and brother were also diagnosed at that time. Years went by before Joy noticed the more rapid progression of CMT symptoms and pursued a genetic diagnosis, which was confirmed as CMT1A. At that time, she turned to HNF for advice on AFOs and a letter writing campaign to tell family and friends about her diagnosis. Since then, Joy has participated in HNF’s CMT Awareness month video campaign and hosted fundraisers in the Seattle area.
Manager, Medical Outreach
Estela was diagnosed with CMT at 4 years-old. Her younger sister followed 3 years later. From that point forward, their parents became heavily involved in advocacy and fundraising for CMT & Muscular Dystrophy throughout Long Island, NY.
“I was lucky enough to be thrown into the non-profit world at a very young age. I was raised in a community that was incredibly passionate and dedicated to improving and saving lives. Joining the HNF has been a ‘Full-circle Moment’ for me; I’m back where it all began.”
Estela’s professional background in design, marketing, and creative direction brings a new perspective to connecting CMT patients to wellness and health. “Health is a multi-faceted approach for CMT. We’re constantly looking to improve quality of life in multiple ways”.
She is an avid user and personal advocate for the AlterG anti-gravity treadmill (running for the first time in her adult life) and MOTUS – Made for Movement program.