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.
Director of Development | [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.
Sean Ekins, PhD, DSc
Chief Science Officier
Sean divides his time between the Hereditary Neuropathy Foundation, Hannah’s Hope Fund, Jonah’s Just Begun and CSO at Collaborative Drug Discovery. He graduated from the University of Aberdeen; receiving his M.Sc., Ph.D. and D.Sc. in Clinical Pharmacology. He was a postdoctoral fellow at Lilly Research Laboratories. He has worked as a senior scientist at Pfizer, Lilly, Associate Director of Computational Drug Discovery at Concurrent Pharmaceuticals, Inc. and Vice President of Computational Biology at GeneGo (now Thomson Reuters).
Sean is Adjunct Professor, Division of Chemical Biology and Medicinal Chemistry, UNC Eshelman School of Pharmacy, University of North Carolina at Chapel Hill; Adjunct Associate Professor, School of Pharmacy Department of Pharmaceutical Sciences, University of Maryland and Adjunct Professor in the Department of Pharmacology at Rutgers University– Robert Wood Johnson Medical School, Piscataway, NJ. Sean is on the scientific advisory board for several companies and editorial boards of the Journal of Pharmacological and Toxicological Methods, Drug Discovery Today, Mutation Research Reviews, and Pharmaceutical Research. He has authored or co-authored >220 peer reviewed papers and book chapters as well as edited four books for Wiley. Sean co-developed the mobile apps ODDT (Open Drug Discovery Teams) and TB Mobile and has been awarded multiple NIH grants.
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.
Jessica 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.
Estela was diagnosed with CMT when she was just 4 years-old. She resides on Long Island, NY, where she lives with her children, 11 year-old daughter Anabella and 9 year-old son Devin, both CMT-free. Estela also has a sister Melissa, who has CMT.
She is a 2001 graduate of Manhattan’s Fashion Institute of Technology (FIT), and began designing furniture and wall décor after graduation. In 2008, she was named one of Oprah’s “Women Who Make Beautiful Things” in “O” Home Magazine. Soon, her business, ONE Décor, was picked up and listed on online Roommates Peel and Stick Décor.
Estela is an avid yogi and credits yoga as “the best thing I’ve ever done for my CMT.” She considers herself an adaptive fitness activist and has experience using AlterG: an anti-gravity treadmill that can be used for physical therapy, injury prevention, and gait training and strengthening for neurological patients.
Director, Medical and Public Affairs
Tina works with HNF to coordinate their medical Centers of Excellence program, a network of 13 medical centers across the U.S. with clinical as well as research expertise with the CMT/HNPP patient community. She also is responsible for HNF’s online HCP Directory, patient-facing CMT-Connect network, and was a planning committee member for the 2016 HNF Patient-Centered CMT Summit. Tina comes to HNF with nearly 10 years of leadership experience at The Neuropathy Association, where she served as president and CEO. During her tenure she became a highly-respected patient advocate and expert on neuropathy and neuropathic pain, with national advisory committee involvement, including Federal pain committee appointments.
She testified for the IOM’s report on “Relieving Pain in America,” which features a quote from her testimony. Her leadership in advocating for neuropathic pain patients led to an appointment by Sec. Sebelius to the Interagency Pain Research Coordinating Committee, for which she was re-appointed twice. She has also been an executive committee member of the Analgesic Clinical Trials Translations, Innovations, Opportunities, and Networks (ACTTION) Initiative (FDA public/private partnership effort). In 2015 she authored the cover article for BioSupply Trends Quarterly magazine on “The Perfect Storm for Patient-Focused Clinical Trials,” which looked at the needs of patient-communities vis à vis the changing winds of policy development and R&D efforts to be more ”patient-centric.”