Stakeholder Advisory Board
The NCHPAD National Community Engagement and Translational Sciences Team formed a National Stakeholder Advisory Board (SAB) to co-lead the efforts to increase enrollment in NCHPAD Connect. The board is comprised of NCHPAD participants living with mobility limitations and/or chronic health conditions and key clinical and community members.
The board is committed to co-creating, co-implementing, and co-evaluating all phases of the efforts. The board has created many initiatives to increase enrollment rates including the UAB NCHPAD AMBASSADOR INITIATIVE.
Meet Our Stakeholders
Betsy Hopson
Betsy Hopson, MSHA, is the Director of the “STEP” Program, the Spina Bifida Program, and the Down syndrome program at Children’s of Alabama and University of Alabama at Birmingham. STEP stands for “staging transition for every patient.” The STEP program is an evidence-based program designed to facilitate timely, uninterrupted care for individuals with complex conditions of childhood as they transition from pediatric to adult care. Prior to her work in the STEP Program, Betsy served as the Coordinator of the Spina Bifida Program for over 15 years. In this role, she handled all aspects of care coordination, case management and transition readiness and planning. She has developed teaching tools, transition guidelines, care protocols and clinic flow operation strategies that are being used in clinics across the country. Betsy is also an international speaker and leader in transition planning for patients with complex healthcare needs and is recognized as an expert in lifespan care. She has served as a PI or co-I on numerous internally and externally funded studies and has authored and/or co-authored more than 40 publications.
Tim Behrens
Timothy “Tim” K. Behrens, Ph.D., CHES, RFSA, FACSM is a husband and father of two boys. In 2020, he contracted COVID and experienced subsequent strokes and brain injuries that left him with disability. Before COVID, Behrens was dean of the College of Health Sciences at the University of Wisconsin-Milwaukee. Currently, Tim is a professor in the School of Rehabilitation Sciences and Technology at UWM, though he works remotely from Albuquerque, New Mexico, because of disability related difficulties. His work is focused on community health, specifically with communities experiencing disability since his experiences. He has expertise in physical activity, public health and evaluation of community programs.
Patty Ericson-Taylor
I have been a Chef for 30 years while being trained & working with some talented Chefs. I have studied also at the Culinary Institute of America. Since my stroke in 2021, I have been appointed to the Barnstable Disability Commission & I’m on the advisory board for Spaulding Cape Cod. I made a promise to be the voice of disabled people in need. Speaking at a Legislative breakfast in our town on the lack of accessibility is a concern and needs to be addressed.
Jessica Azrin
Jessica Azrin has long been an advocate for people with chronic illnesses, mental health conditions, disabilities, and people in other marginalized communities, especially the LGBTQ+ community. She got her bachelor’s in science in Psychology from Oglethorpe University and is currently attending George Washington University to receive her master’s in public health. She worked as a psychometrist through Birmingham Neuropsychology, administering neuropsychiatric evaluations for outpatients and inpatients at Lakeshore Rehabilitation Center. As a researcher and health communicator at heart, she reads medical and psychological publications and loves to translate them into clear language for people less familiar with research terminology. She has used her skill in health communication for various forms of advocacy, including phone banking and text banking to teach people about vaccines and helping them to find vaccination centers, speaking with members of Congress about funding lupus research and advancing patient-benefitting legislation, working with city governments to call for awareness and support for people with chronic illnesses, and helping others with research and outreach whenever possible. She currently runs a National weekly online support group for the Lupus Foundation of America called Tuesday Night Lupus Club in which she offers resources, support, and information to people with lupus and similar autoimmune conditions. Her goal is to help as many people as she possibly can as much as she possibly can.
Jules M
Jules has served as Executive Secretary to the Board of Regents, University System of Georgia; Executive Assistant and Administrator positions to large profit and non-profit organizations. Julia (Jules) is a published author and photographer and has received a number of awards and honors including consistent recognition from the Multiple Sclerosis and Association of America, National MS Society, and others.
Jane Stachowiak
Jane Wright Stachowiak had her ischemic stroke in 2003 at age 50. She was intimate with stroke since her father had his four years before. These 25 years around stroke has allowed her to encounter so many great people. She worked with therapists and her physiatrist in the development of the Brain Music Workshop, the administration of Stroke Support – Find Your Strength Facebook page, and the inclusion of stroke survivors in the Boston Pops Holiday Concert at Spaulding Charleston. She has participated in a dozen research projects, Adaptive Sports, the Stroke Support Group and PAVING STEPSS of Wellness at Spaulding.
Jane lives with her husband, Larry, in Vermont and Massachusetts. She says that Larry has played a major force in her recovery success. During her 21 years as a stroke survivor Jane has been active in adaptive sports including running up Heartbreak Hill during the 2009 Boston Marathon. Jane returned to work 6 months after her stroke – starting with volunteer and part-time work. Three years later she returned to work full-time coaching and instructing college students in wellness, recreation and leadership. She retired in 2016 after working as a student affairs professional (34 years) and a fitness entrepreneur (8 years).
The past two years Jane has been dedicated to gain skills to improve (1) self-care and compassion practices, (2) effective communication with others, and (3) body awareness functionality. Jane says “This effort has complemented the NCHPAD program as I feel more self-assured in my mind, body and soul. NCHPAD is a jewel bringing in light, love and grace into the lives of people with disabilities”
