Tips & Tricks for Self-Managing Pain & Fatigue – Maggie Buckley
Maggie Buckley has been a Patient Advocate for more than 25 years while living with the chronic pain condition Ehlers-Danlos syndrome. She currently serves on the board of PainCommunity.org. and volunteers in many roles for The Ehlers-Danlos Society (Conference Speaker, International Consortium Pain Working Group, Comorbidity Coalition Member, and Advisor to the Board). Additionally, she is a member of the PCORI Editorial Review Board. She participates as a member of the Stakeholder Advisory Group on the PCORI-funded EMPOWER pain research project at Stanford University. Previously, she served on the Board of Directors of Ehlers-Danlos National Foundation and American Pain Foundation. She served as the Patient Liaison to the Board of Directors of the Academy of Integrative Pain Management — the only healthcare professional organization with patient representation at that level. Other volunteer experience has been with Northern California Pain Care Initiative, National Fibromyalgia Association, American Cancer Society, Special Olympics, and NORD. She has an undergraduate degree in Social Work and an MBA in accounting with experience in banking and business management. In 2019 she became a Board Certified Patient Advocate. She has testified at local, state and federal policy hearings, spoken at conferences and in the media, written articles, and coached hundreds of people to self-advocate for better care.
Deep Breathing Exercises & Other Ways to Manage Pain and Anxiety – Jeannie Di Bon
Jeannie Di Bon is a Pilates and rehabilitation teacher, author of the book Pilates Without Tears and founder of the London-based studio Create Pilates. Jeannie’s areas of expertise are rehabilitation from injury and illness, chronic pain management and hypermobility syndrome and EDS. Being hypermobile herself, she was drawn to the field and now has a large client base with hypermobilty and EDS. Through working on her own body and with her clients, she has devised a structured Pilates-based programme called “Strengthen Your Hypermobile Core.”
Self-Advocacy – Barby Halstead-Worrell
Barby Halstead Worrell has EDS and trains others to live their “best possible lives”. Now retired, Barby worked with the National Education Association, representing over 3 million members. Her work spanned fields such as executive management, organizing, education pedagogy, organizational culture change, and crisis intervention. She co-produced an Emmy winning TV show on education innovations and co-created Read Across America, an annual reading celebration on Dr. Seuss’s birthday that involved over 4 million people. She trained in Southeast Asia on education for girls, AIDS and teacher quality.
Nutrition & Hydration – Dr. Heidi Collins
Dr. Collins received her medical degree from Northwestern University in Chicago, IL and completed her residency in physical medicine and rehabilitation at the University of Washington in Seattle, WA. She is board certified in physical medicine and rehabilitation. Dr. Collins provides care to patients with a wide variety of diagnoses, including: chronic musculoskeletal or neuropathic pain, work-related injuries, multiple sclerosis, muscular dystrophy, progressive neurodegenerative disorders and movement disorders, stroke, traumatic brain injuries, orthopedics and general rehabilitation.
Art, Music, and Coping – April Ikeda
April Ikeda began playing piano at the age of 3, at which time music became an unwavering companion for the following years of surgery, illness, chronic pain, and disappointments. After high school, April attended Berklee College of Music where she found her calling in Music Therapy. After receiving her degree and license to practice, April has worked in special education, pediatric oncology, and geriatrics, and continues to make music and art in her spare time.
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