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.
Fundraising Coordinator | [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 Officer
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.
Joy is excited about promoting, growing, and strengthening the Inspire CMT support community as it is a valuable social media tool which connects patients to patients and caregivers in order to share important information about CMT. She invites you to create your profile and join the discussions today!
Matt is a licensed and certified genetic counselor with over 7 years of clinical experience. He obtained his Bachelors in Genetics from Washington State University and his Masters in Genetic Counseling from the University of Texas Health Science Center in Houston. Prior to becoming a genetic counselor, Matt performed research at the College of Veterinary Medicine at Washington State University, and has co-authored several scientific journal articles. He is an active member of the National Society of Genetic Counselors and has served on many volunteer committees within the organization. He enjoys speaking at local schools on the career of genetic counseling; and regularly serves as a guest lecturer at the College of Nursing at WSU Spokane. He is a consultant to genetic testing companies and is supportive of the vision of the Hereditary Neuropathy Foundation (HNF). Matt is very excited to be a contract genetic counselor with HNF, where his duties will include managing the Global Registry for Inherited Neuropathies (GRIN).