BOARD OF DIRECTORS
Carol works as a clinical social worker and family law attorney in the Washington DC area representing children and families in the areas of abuse/neglect and special education. Previously, she worked as a therapist and counselor at the Reginald S. Lourie Center for Infants and Young Children and at the National Child Research Center. She earned her masters degree in social work at Columbia University and her law degree at Georgetown University. Together with Marybeth Caldarone, Carol has written a children’s book series featuring a spunky young heroine living with Charcot-Marie-Tooth. Arlene on the Scene and the sequel, Arlene, the Rebel Queen, encourage readers to embrace the differences among us and to become activists within their community. Tapping into her school counseling background, Carol now leads the Hereditary Neuropathy Foundation’s School Outreach Program in which these books are used to explore themes of empathy, self-image, and youth activism through lively discussion and an engaging audio-visual presentation. Carol now presents at schools nationwide to spread the books’ powerful messages and to raise awareness of CMT.
Joy Andal Kaye
Joy Andal Kaye brings a strong human resources background to the HNF Board. Having served as Vice President in Human Resources at PaineWebber and Merrill Lynch Investment Banking Groups from 1992-1999 and Manager of University Relations at Apple Computer from 2000-2003, she recently was the Director of Business Recruitment at J.Crew. She now serves as Co-chair for the Annual HNF Golf Outing at Glen Arbor Golf Club. An avid golfer and runner, Joy also volunteers her time working with the First Tee Organization of Metropolitan New York as well as participating in Team Fox, the Michael J. Fox’s Parkinson Foundation. She is an alum of the MHS Class of 83 and has deep admiration for the work Allison and her family have been doing for HNF and is very excited to be joining the Board. Joy currently lives in Westchester County, NY with her husband, Eric, and her stepchildren, Jason and Sydney.
Allison Moore, CEO and Founder of HNF, 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.
Donna Cusimano, is a real estate attorney whose practice focuses on real estate and complex commercial lending transactions. Donna earned her JD and Masters of Law in commercial real estate from The John Marshall Law School located in Chicago, Illinois in the spring of 1999. After graduation, Donna returned to New York City where she spent 3 years with the law firm Feldman & Markman, LLP and 12 years with the firm Todtman, Nachamie, Spizz & Johns, P.C. Donna representing small community banks and small corporations secure financing for property acquisitions. Donna has recently relocated to south Florida where she intends on continuing to practice law. She looks forward to helping HNF in its mission to raise awareness and find a cure for CMT.
Iris Adler works closely with the HNF Board of Directors and its supporters to identify and analyze research options and ways to fund them. She and her husband, Nathan Adler, are founders of the Help Elliot Live Proud (H.E.L.P.) research fund which they named in honor of their grandson, Elliot, who has CMT Type 2. The H.E.L.P. fund supports new initiatives for CMT research within HNF’s TRIAD program. Iris began her career in the purchasing and sales branch of the fashion industry. In 1985, she started her own company, Best Wishes, in Scarsdale, NY 1985. Her business success and her relentless non-profit efforts, have earned her a reputation as a closer, a woman who can get the job done.
Marybeth Caldarone is a speech/language pathologist working with children in a public middle school in Rhode Island. She has CMT2 as does her daughter, Grace. Although she has needed to use a wheelchair since high school, Marybeth wasn’t diagnosed with CMT until Grace began exhibiting symptoms as a toddler. Determined to increase CMT awareness and change things for her daughter, Marybeth partnered with HNF to produce Arlene On the Scene, a children’s chapter book featuring a young girl with CMT that is successfully increasing awareness among children, parents and educators. Marybeth also hosts an annual fundraiser in RI each fall, honoring Grace’s Courage Crusade.
Matt Downing, a senior marketing executive with Sirius XM Radio, joined the Board in 2010 to help raise nationwide awareness of CMT through the Hereditary Neuropathy Foundation. In addition to his professional expertise, Matt brings to the board a unique family perspective: three generations struggling with the damaging progression of CMT. Matt’s father suffers from CMT, and Matt and his sister were diagnosed with it at an early age. Matt is also the father of children who are dealing with CMT as well. Matt is committed to finding a cure for his children and helping to share the knowledge of those who have found effective treatments for their CMT symptoms. He is also an avid golfer and cyclist and strongly advocates the benefits of an active lifestyle for those with CMT. Matt is a native of Buffalo, New York, a graduate of The University of Michigan, Ann Arbor, and lives in Rockville Centre, New York, with his family.
Debi Houliares is the Director of Programming at the EquiCenter, Inc. a non-for profit therapeutic riding facility as well as Head Riding Instructor. Debi holds certifications as an international Therapeutic Riding Instructor and Equine Specialist in Mental Health and Learning. Debi joined the HNF board to raise funds for CMT Type 6 and spread awareness for her son Zachery, who was diagnosed with CMT Type 6 in January 2014. As a side note she believes that therapeutic riding would benefit folks with CMT too! Debi resides in Victor, New York and is married with three children.
A technology startup veteran, Mr. Lynch brings his experience with forming new strategies and developing nascent ideas to the Board of HNF. As a lifelong entrepreneur, Gerry aims to harness the same spirit that has brought new technologies to market success from just sketches on a whiteboard to help drive the agenda at HNF. Gerry believes that the same spirit that sparks innovation in the business world will be the same spark it will take to light the path to new treatments and a cure for CMT. Gerry lives in the North Shore of Boston with his wife and daughter who has CMT type 2. His daughter serves as his guiding force and reminds him everyday that hard work, courage, and a positive attitude are the only weapons one needs to boldly face any challenge that awaits us.
Kerin Reilly is currently the Director of Admissions for The American Academy of Dramatic Arts, New York campus. She is responsible for the management of the New York Admissions Department. Aspects of this position include recruitment, outreach, admissions, informational presentations and handling VIP visitors. In addition to working on the Admissions side she also taught Public Speaking for the Adult Accelerated Degree Program in both the hybrid online format and traditionally at the Mount Saint Mary College’s military satellite campuses which are located at West Point and Stewart Air Force Base. Kerin joined the HNF board to bring awareness to CMT. Her beautiful, brave daughter, Dakota has CMT and plans to do everything in her capacity to help her daughter and all those living with CMT. Kerin resides in New York and is married with two children.