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.
Chief Scientific Officer
Dr. Lucia Notterpek is Professor and Chair of the Department of Neuroscience at the McKnight Brain Institute at the University of Florida, Gainesville, Florida. Dr. Notterpek investigates how the loss of glial insulation around axons, called myelin, contributes to the pathogenesis of hereditary and age-related neural disorders. Diseases that are specifically linked with defects in myelin include peripheral neuropathies, such as Charcot-Marie-Tooth diseases and multiple sclerosis. Recent studies also suggest an involvement of myelin damage in the underlying and painful symptoms of trigeminal neuralgia.
Current research is focused on understanding the subcellular changes within neural cells that underlie the progressive nature of these disorders and normal aging-associated myelin degeneration. A major effort of Dr. Notterpek’s lab focuses on approaches to maintain healthy myelin during lifespan and/or restore it in disease paradigms. The laboratory is equipped with models and reagents, including small molecule therapeutics and genetic models to attain these goals. Other areas of active investigation include the optimization of lipid nanoparticles as therapy delivery vehicles for neural disorders. She has authored and co-authored over 65 publications, reviews and book chapters. She is actively involved in the educational and research missions of the College of Medicine at the University of Florida. Nationally and internationally, she serves on research advisory and grant review panels for private and public organizations. Her research efforts have been supported by the NIH, the National Muscular Dystrophy Association, the National Multiple Sclerosis Society, the Facial Pain Foundation and the Hereditary Neuropathy Foundation.
Accounting ManagerCherie 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 CoordinatorBernadette (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 DirectorJoy 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.
Digital Asset ManagerJessica joined HNF in August 2015 to assist with weekly blogging, website design, managing the Global Registry for Inherited Neuropathies (GRIN), and assisting with HNF’s quarterly CMT Update. Jessica brings a wealth of knowledge to HNF’s website design. Jessica is a veterinarian by training. Her knowledge of the medical field accompanied by her artistic mind has made her an important member of the HNF team. Jessica enjoys yoga, hiking, reading, and spending time at the beach.
Manager, Medical OutreachEstela 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.