Lunch and Learn Webinar
June 4, 2026 | Noon to 1:30 PM
People living with Ehlers-Danlos Syndrome and other rare, or under supported conditions often spend years navigating a healthcare system not designed for medically complex patients. The impact of ongoing medical uncertainty, dismissal, diagnostic delays, and misdiagnosis can create additional challenges compared with the patient journey of mainstream, better-understood conditions. Over time, these experiences can leave lasting psychological and physiological impacts that extend far beyond anxiety or stress.
Inspired by themes explored in the documentary film, Complicated, this online program examines the often-overlooked relationship between chronic illness, medical trauma, and Complex PTSD (C-PTSD) in the EDS and rare disease community. Participants will gain a deeper understanding of how trauma can develop within healthcare settings, why individuals with EDS may be especially vulnerable, how trauma responses can present in everyday life and medical encounters, and what healing-centered approaches may help patients, families, and providers move forward.
This session is designed to create a more compassionate and informed understanding of the emotional burden carried by many people living with complex chronic illness — while also offering hope, validation, and practical tools for healing.
Donna is an advocate for Ehlers-Danlos Syndrome (EDS) and complex pediatric pain patients. She has spent over a decade supporting rare disease families who have been falsely accused of medical child abuse. She is the Producer of Complicated, an Oscar-qualified feature-length documentary by Open Eye Pictures that examines the systemic challenges faced by families navigating rare disease at the intersections of healthcare and child protection.
As a rare disease mother to three children diagnosed with Ehlers-Danlos Syndrome, POTS, MCAS, Complex Regional Pain Syndrome, Tethered Cord Syndrome and TD1, she brings both lived experience and strategic expertise to her work, helping to reframe rare disease not as a clinical outlier, but as a critical frontier for advancing medical knowledge and health equity.
Donna is the Founder of ElevateRARE, an educational think tank and consulting group focused on supporting healthcare providers and institutions committed to improving awareness and health outcomes by developing better care pathways for rare and medically complex people.
Founder, Innovative Care Institute
The Innovative Care Institute is dedicated to eliminating preventable medical trauma by transforming how health systems support their staff and deliver care.
Founder, The Butterfly Pig: Medical toys to help improve pediatric patient experiences
Podcast Host, Care Rewritten: focused on ending medical trauma by transforming healthcare into a more humane, patient-centered experience. It explores reducing medical fear through trauma-informed advocacy, particularly in pediatrics
Mary Jenner is a nurse turned entrepreneur and systems-change advocate on a mission to eliminate preventable medical trauma in children.
She is the founder of The Butterfly Pig, a company creating realistic, inclusive medical-play tools that help children and families understand, process, and feel safer during medical experiences. Her products are used by over 20k families, and in over 140 hospitals worldwide.
Mary is also the visionary behind the Innovative Care Institute and the THRIVE network, a model designed to empower frontline staff in leading change around trauma reduction, while sharing learnings across hospital systems worldwide.
Danielle King joins us as a wellness ambassador for holistic healthcare, an ally to individuals living with medical and workplace trauma, and advocate to patients and providers navigating complex health conditions and institutional barriers to care.
Danielle has decades of lived experience and perspective from maneuvering her own health labyrinth, an often unsupported journey exacerbated by systemic harm. Her efforts have been shaped by a long-standing personal interest in mind-body medicine and formal education in the healing arts field. Her lengthy career in the customer service industry recently pivoted from big tech towards integrative advocacy after surviving prolonged corporate retaliation, harassment, and disability discrimination in the workplace.
Danielle actively serves on the Patient Advisory Board for both the University of Virginia’s EDS and Hypermobility Disorders Center and Mayo Clinic’s EDS Clinic, and was recently accepted into the EDS ECHO Health Advocacy Program offered by The Ehlers-Danlos Society. She also contributes to End Workplace Abuse, an organization and national movement focused on protecting workers from psychological harm on the job.
Danielle has an innate commitment to helping others feel seen, heard, and empowered within systems that can be dangerously unjust. She strives to bridge personal experience with collective action, and aims to lend inspiration, validation, and tools of resiliency along the way — deliberately prioritizing her own health and recovery above all.
Speech-Language Pathologist, Author, Speaker
Founder, A Neu Healing: Treatment program for disorders of the nervous system.
Vanessa Abraham, M.S., CCC-SLP, is a Speech-Language Pathologist, author, speaker, ICU survivor, and owner of A Neu Healing. As both a clinician and a patient, she understands firsthand what it means to be “the person in the bed.” After surviving a critical illness and developing Post–Intensive Care Syndrome (PICS), she experienced the devastating loss of her ability to speak, move, and safely swallow food—skills she had dedicated her career to helping others regain.
Her memoir, Speechless: How a Speech Therapist Lost Her Ability to Speak and Her Silent Struggle to Reclaim Her Voice and Life, chronicles her powerful journey through depression, vulnerability, and healing. Today, she uses her experience to help others recover from the devastating psychological aspects of PICS and neurological disorders, while advocating for compassion, community, and trauma-informed care.
