Mary Beth is the mother of a 24 year old son who is a 22 year
survivor of neuroblastoma. As a parent advocate for most of
those 22 years, she has focused specifically on long term
survivorship issues. She has been a strong voice for the
children impacted by chemo-induced hearing loss, and
helped generate support for the development of Pedmark,
a unique formulation of sodium thiosulfate (STS) which
prevents platinum-induced ototoxicity in pediatric patients.
She sits on the Survivorship Advisory Council for Children's
Cancer Cause and has been a contributing member of the Coalition Against Childhood Cancer's (CAC2) Advocacy & Survivorship committees for the past five years. Mary Beth writes the blog Survivorship Matters, featuring unique perspectives on an array of issues facing childhood cancer survivors and their families. She is the Social Media Resource Liaison for NCCS (Neuroblastoma Childhood Cancer Society), providing support and recommendations to parents at various stages of treatment for their children and survivorship. She additionaly has created a Facebook support page specifically for parents of teenagers/young adults and neuroblastoma survivors: Neuroblastoma Survivors - Transitioning Youth & Young Adults.
She brings over 30 years of experience in communications and 15 years of experience in nonprofit leadership, working for the majority of that time advocating for children's support and services for learning disabilities, behavioral disorders and executive dysfunction. Most of that time she worked in the autism community, establishing community partnerships and creating new programs for transitioning youth/young adults to build confidence and lifeskills to prepare for success in adulthood and the workplace.
For the past six years she has worked as the Director of Programs for the National Association for Children of Addiction, advocating for awareness and support for children impacted by parental addiction and educating the community about adverse childhood experiences (ACEs) and the long-term effects of trauma in the household. She also serves as peer reviewer for the Standards of Excellence Institute nonprofit certification program.
Mary Beth‘s younger son Trent is 22 years old. She enjoys time with her adult sons, gardening, listening to music, and being at the beach.