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nfcentralplains@gmail.com
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SPEAKER BIOS
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Stephanie Pratt is a licensed master’s level social worker passionate about improving care coordination for youth with special health care needs. As Transition Program Manager at Children’s Mercy, she leads communication and implementation of consistent transition-to-adulthood practices across divisions. Stephanie brings professional experience in both pediatric and adult hospital settings, along with personal insight as the mother of an 11-year-old with cerebral palsy and a tracheostomy. She earned her MSW from Loyola University Chicago. |
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Mr. Sheard is a board-certified patient advocate specializing in healthcare navigation for rare diseases, particularly neurofibromatosis (NF). His advocacy is shaped by 45 years as a behavioral health professional and personal experience living with NF1. One of nine family members with NF, he has also been a caregiver to his children and father. He serves on the board of Camp Brainy Ridge, teaches self-advocacy to youth, works as an NF Patient Advocate at Massachusetts General Hospital on the MY NF Guide PEER Study, and advocates for NF research on Capitol Hill. |
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Eunice Lee was diagnosed with neurofibromatosis type 1 (NF1) at age seven, with significant complications emerging in her late teens. Guided by lived experience, she is committed to strengthening the NF community by reducing isolation and supporting access to care, research, and leadership opportunities. Eunice serves as Co-Chair of the Children’s Tumor Foundation Junior Board, helping lead a network of young professionals. Based in Los Angeles, she works at a collaboration and communications consulting firm and is pursuing a Master of Public Policy at the University of Southern California, with interests in emerging technology and data governance. |
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Joe Booe is a Patient Education Manager (PEM) at Alexion, AstraZeneca Rare Disease. His role is to help patients and caregivers learn more about NF through local and community education sessions and events. Joe is inspired by the stories of patients living with rare diseases and their challenges. His goal is to empower patients by providing them with the resources they need to effectively manage their condition. |
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Noël Kearns is an art therapist with 30 years of experience serving individuals with physical and mental health challenges in the Kansas City area. She recently opened her own practice, START THERAPY, offering individual and group art therapy sessions. Noël helps people of all ages use art to support emotional expression, empowerment, self-esteem, acceptance, and condition management. She believes art therapy is about embracing the creative process—not perfection—and that no artistic talent is required. |
