Melissa Glenn

Presenter

Melissa Glenn, MA, LMHC is a Licensed Mental Health Counselor who specializes in supporting clients living with chronic illness and medical health challenges. Prior to launching her practice, Melissa worked in community behavioral health and non-profits for over a decade. Her experience includes clinical executive leadership, building social service programs in non-traditional spaces, publications, and providing mental health education to professionals in a variety of industries. Melissa lives with multiple rare chronic illnesses that impact her daily life and functioning. Her experience has made her passionate about disability awareness, equity, and accessibility.

Jennifer Warner

Panelist

Jennifer (Jen) Warner is an Illinois, Washington, Oregon, and New York State licensed clinical social worker and psychotherapist with advanced training and certification in trauma-informed care and integrative somatic trauma therapy, as well as holistic health and nutrition. Jen has provided direct services to child and adult survivors of interpersonal violence within mental health clinics and as the crime victim social worker at a level 1 trauma center and busiest single site emergency room in New York City. She has created and taught courses on trauma-informed care at the graduate social work schools of Portland State and Columbia Universities. Jen’s decision to shift the focus of her work to support individuals living with traumatic stress related to complex chronic illness, was based on her own experience of navigating the healthcare system as a person with invisible disabilities. Jen is committed to growing understanding of chronic illness as a trauma, the impact of traumatic stress on the body and mind, and the importance of incorporating and implementing trauma-informed care within all systems that serve this population, their caregivers, and providers. Jen currently lives in Chicago with her wife where she maintains a private psychotherapy and consulting practice and continues to see clients remotely across the country.

Morgan Fitzgerald

Panelist

Morgan Fitzgerald is a neuroscientist and migraine researcher focused on advancing the scientific understanding of chronic migraine. She is committed to reshaping how migraine is understood and treated by integrating rigorous science with patient-centered perspectives. Her broader mission is to drive precision approaches in migraine care and to reduce the gap between research findings and everyday clinical practice.

Anikah Salim

Panelist

Dr. Anikah H. Salim, DrPH, MPH, CPH, has lived with migraine since childhood, but her attacks were episodic and undiagnosed until adulthood. In 2015 after experiencing a severe, ongoing migraine attack for nearly a year, she was diagnosed with chronic migraine with aura. She was just starting her Doctor of Public Health degree in epidemiology when her migraine attacks became daily episodes. Trying to manage her condition amidst full-time work and school, Anikah felt alone and as if no one understood the gravity of what she was suffering through. Learning more about her condition and connecting with others in the migraine community, Anikah felt the strong urge to join the movement and advocate for herself and others. She joined her first Miles for Migraine Walk/Run in the fall of 2018 and increased her involvement in the Migraine Patient Education Days and Retreat Migraine as well as other events. In 2019, she trained with the US Pain Foundation to become a support group leader. Personally understanding the challenges associated with traveling for in-person meetings, in January 2020 Anikah worked with Miles for Migraine to host and lead the first ever weekly Miles for Migraine national virtual support group, and it continues to grow and thrive today. After completing her doctoral degree in May 2020, Anikah has been able to dedicate more time to pursuing her passion of sharing her journey and experience to increase migraine awareness and provide support to those living with migraine and their families who support them. Whether it is migraine or another chronic condition, she wants everyone to know, "You are not alone."

Joanna Hanaka

Presenter

Joanna Hanaka is a disability justice advocate and chronic illness content creator living with Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and Ehlers-Danlos Syndrome (EDS) alongside other chronic illnesses.

Anna Cechony

Presenter

Anna Cechony is a disability doula, transition coach, researcher, writer and access consultant based in Edmonds, WA. Based on research and lived experience as a disabled person, she works to make becoming and being disabled feel like coming home to a loving, creative community rather than something that is scary, isolating or shameful. She has her Master’s in Learning and Organizational Change and Certificate in Organizational and Leadership Coaching from Northwestern University and is a Board Certified Coach. She's also an avid sewist, quilter, knitter and general maker working towards a lifelong goal of being able to build a home and make everything in it with the help of her community.

Cheryl Crow

Panelist

Cheryl Crow, OTR/L, Occupational Therapist is passionate about helping others living with inflammatory forms of arthritis figure out how to live a big, beautiful life alongside the inevitable curveballs that chronic illness brings. After living with rheumatoid arthritis for over a decade and becoming an occupational therapist, Cheryl founded Arthritis Life with the mission of educating, empowering and supporting people with arthritis. Cheryl is known for her entertaining yet educational videos featuring arthritis life hacks, product demonstrations, and insights into the psychosocial aspects of life with invisible chronic illness. She created and hosts the Arthritis Life Podcast and runs the online self-management course and curriculum-based group support program Rheum to THRIVE, where she helps people adjust to their conditions and live full and meaningful lives. Cheryl lives in the Seattle, Washington area with her husband, son, cat and cavalier king charles spaniel dog. In her free time she can be found playing board games, spending quality time with friends and family, reading, swing dancing (when symptoms allow), traveling, writing and taking naps.

Phylicia Headley

Presenter

Phylicia Headley, DSW-C, MSW, LCSW, is a Doctor of Social Work candidate at California Baptist University. She earned her Bachelor of Social Work from Aurora University and her Master of Social Work from the University of Illinois Chicago (UIC). Her professional background is rooted in community mental health, and for the past three years she has worked at a Federally Qualified Health Center (FQHC) supporting individuals with a wide range of chronic health conditions. Her research and practice focus on chronic illness, social isolation, and barriers to care.

Rob Nolan

Presenter

Rob Nolan is the State Affairs Coordinator at the Arthritis Foundation, supporting state-level advocacy efforts to advance policies that improve the lives of people with arthritis. Rob first became involved with the Arthritis Foundation as an advocacy intern. Before joining the Foundation full-time, he gained experience in public policy, research, and government affairs through roles with the Ohio Office of Budget and Management and the University of Dayton. Rob holds a Master of Public Administration from the University of Dayton, where he focused on public policy and nonprofit management. Rob is committed to advocating for policies that remove barriers to care and improve health outcomes for the arthritis community by ensuring that patient voices are heard in the policymaking process.

Nate Milam II

Presenter

Nate Milam II (he/him) was born in Fairfax, Virginia, and raised in Upper Marlboro, Maryland. He is a nationally recognized rare disease advocate and health equity leader whose work is shaped by lived experience, resilience, and a deep commitment to community-centered change. A survivor of Hemophagocytic Lymphohistiocytosis (HLH) who underwent a life-saving bone marrow transplant, Nate channels his personal journey into advancing more equitable, inclusive systems across healthcare, research, policy, and sports. Nate is the Founder and CEO of Stripes of Solidarity (SOS), an intersectional advocacy platform dedicated to amplifying underrepresented voices through storytelling, education, and action. Through this work, he leads equity-centered initiatives and creative projects, including the Rare & Real podcast, which explores rare disease, identity, and authentic patient experience. He currently serves as Patient Advocacy Operations Coordinator at the United Porphyrias Association, where he supports the organization’s mission to improve quality of life for people living with porphyria and advance awareness, research, and access to therapies across all porphyria subtypes. In this role, Nate works closely with leadership to strengthen advocacy operations, patient engagement, communications, and community-focused programming. Nate’s leadership extends across the rare disease landscape. He serves as an Ambassador and Co-Chair of the Patient Advisory Board for the Histiocytosis Association and the North American Consortium for Histiocytosis (NACHO), a Young Adult Rare Representative (YARR) for the EveryLife Foundation for Rare Diseases, and is a Patient-Caregiver Advisory Board Member for the Rare Disease Diversity Coalition, advancing equity in research, care delivery, and policy. Through his advocacy, speaking engagements, and collaborative leadership, Nate continues to build spaces where patients and athletes are seen, supported, and empowered.

Carter Hemion

Presenter

Carter Hemion (any/all pronouns) is a patient advocate living with classical Ehlers-Danlos syndrome, mast cell activation syndrome, and other chronic illnesses. They are the Advocacy & Accessibility Director at Stripes of Solidarity to amplify underrepresented voices in the rare disease space and promote equity across research, policy, and healthcare. Carter also works as the Director of Operations at Immunocompromised Association to serve immunocompromised community members by promoting education, raising awareness, and fostering community connections. They enjoy working with nonprofits, biopharmaceutical companies, federal agencies, policymakers, community coalitions, and other stakeholders to move forward our shared goals of improving the lives of all those impacted by rare diseases and chronic illnesses.

Sue Huie

Presenter

Sue Huie is the founder of Supportegy Wellness, supporting professionals living with chronic illness to reclaim energy, confidence, and quality of life through practical, science-informed mind-body tools. Her work blends nervous system regulation, habit design, and compassionate pacing, focused on what helps people function in real life, not “power through.” Sue brings both lived experience and a systems approach to thriving with chronic conditions, with a special interest in how music, gentle movement, and meaning-making can reduce stress load and improve daily resilience. She teaches clients to build personalized toolkits that honor capacity while still moving forward with purpose, connection, and joy.

Casey Berna

Presenter

Casey Berna, LCSW has been a clinical social worker and patient advocate in the endometriosis, infertility, pregnancy loss, and chronic illness communities for the past 15 years. Casey sees patients individually in her private practice, while also collaborating with global nonprofits in these spaces to help make care more accessible. Casey's newly released book, "Endometriosis From Harm to Hope: A Chronic Illness Guide" explores the mental health impact of chronic illness while also acknowledging the systemic obstacles that patients face that cause more medical trauma.

Ashley Berghoff

Presenter

Ashley Berghoff, MS, is a PhD candidate in Human Development and Family Studies at the University of Wisconsin-Madison. Her research focuses on how people integrate illness into their identity and how young adults adapt to illness. She strives to approach research with the mindset that poor health is not a moral failure, but rather a result of the socioecological and biological factors that create varying abilities to cope with and manage illness. She received her Masters of Science in Human Development and Family Studies in 2024 from the University of Wisconsin-Madison. She recently launched her consulting business, Nested Impacts, which helps organizations design, implement, and evaluate their community programming. She identifies as chronically ill and disabled.

Kim Moy

Presenter

Kim Moy is a caregiving coach who helps overwhelmed chronic illness caregivers build resilience, prevent burnout, and reclaim a sense of self. She brings 20 years of lived experience caring for her husband with severe ME/CFS and supporting her late parents through Alzheimer’s, alongside professional training as a board-certified health and wellness coach.

Sheena Yap Chan

Keynote

Sheena Yap Chan is a Wall Street Journal and Publishers Weekly bestselling author, TEDx speaker, keynote speaker, strategist, and award-winning podcaster recognized for her work in elevating women’s leadership and self-confidence through the power of media and visibility. She is the founder of the Confidence Through Visibility™ movement and host of The Tao of Self-Confidence podcast, ranked in the top 0.5% globally with over 1.3 million downloads and 800+ interviews featuring celebrities, CEOs, and cultural icons. Her debut book, The Tao of Self-Confidence, was named one of the top 20 best self-confidence books of all time by Book Authority, while her latest release, Bridging the Confidence Gap, is a bold call to reimagine leadership by making visibility and self-trust core competencies. Through her signature VISIBLE Framework™, Sheena delivers transformational keynotes and corporate programs that help organizations bridge the confidence gap, retain diverse talent, and build cultures where women are seen, heard, and respected. Her work has been featured on NBC News, FOX, MindValley, and The Manila Times, and she has spoken for global brands including NASA, Live Nation, and UKG. Sheena believes that confidence is something we can build—and that visibility creates the impact we wish to see in the world.

Emily Lafeber

Presenter

Emily Lafeber, RP, CCC, is a Registered Psychotherapist (RP) and Canadian Certified Counsellor (CCC), and the founder of Blume Therapy and Wellness, an online mental health clinic specializing in complex health conditions, including chronic illness, autoimmune conditions, digestive disorders, cancer, and grief. Her work is grounded in a compassionate, trauma-informed, and non-pathologizing approach that supports individuals navigating the psychological and emotional complexities of long-term illness and the healthcare system. Emily’s professional practice is deeply informed by her own lived experience with chronic illness, which shapes her commitment to meaning-making, nervous system regulation, and values-based living. She is passionate about helping individuals reconnect with identity, purpose, and agency (beyond diagnosis) while honouring both the grief and growth that can coexist in chronic illness.

Hilary Hodge

Presenter

A champion of parents with chronic health conditions, Hilary’s writing and classes provide parents with age-appropriate strategies, tools, and scripts for talking to their children about their illness, hospitalizations, medical emergencies, heritable conditions, and much more. As a mother with two diseases, Hilary draws on her own experience as well as more than 100 hours of interviews with parents, child psychologists, teachers, and medical professionals. Hilary has worked as an author and editor for Oxford and Cambridge University Presses, Pearson, and National Geographic and written for Slate and Hemispheres. She is also an adult education expert and served for many years as the Associate Vice Chancellor of Adult Education for the City Colleges of Chicago. She is currently finishing the book The Art of Parenting While Sick. She is the patient co-chair of the severe asthma arm of the European Respiratory Society and leads frequent trainings to help families plan for medical emergencies. She holds a BA in Spanish, Italian, and Philosophy from Kenyon College and an MA in Linguistics from the University of Florida. She is the Director of the Angers Literary Festival and lives in the Loire Valley in France with her husband and son.

Alexandra Wildeson

Panel Moderator

Alexandra Wildeson is a content creator and host of Calling in Sick, a podcast on the Just Media Network that centers honest, nuanced conversations around chronic illness, women’s health, and modern wellness. Drawing from her lived experience navigating multiple autoimmune and chronic conditions — including Polyarteritis Nodosa (PAN) Vasculitis, Mixed Connective Tissue Disease/Lupus, Endometriosis, Small Fiber Neuropathy, and Complex Regional Pain Syndrome — Alex blends storytelling, education, and lifestyle content to build community, challenge misconceptions, and expand how we define health, identity, and productivity. Before pivoting into media and advocacy, Alex built her career in finance and capital allocation, working across investment banking, private equity, and venture capital, including roles at large institutional platforms. She continues this work today as a Venture Partner at HotStart, an early-stage venture fund focused on celebrity-founded brands. Following a major spinal injury in 2023, Alex shifted her focus toward advocacy, content creation, and podcasting. Through Calling in Sick and her broader lifestyle platform, she explores what it means to build a meaningful, sustainable life while living with chronic illness — blending lived experience, practical tools, and healing modalities. She is also currently preparing to launch a digital platform aimed at expanding access to education, tools, and community for chronically ill individuals.

Alec Bradbury

Panelist

Alec Bradbury, FNP-BC, is a board-certified family nurse practitioner working in street medicine, where he serves the unhoused population of Southern California. In addition to his clinical work, he educates healthcare providers on reducing stigma and expanding access to care for underserved communities. Alec is particularly passionate about advancing the understanding of chronic pain and complex illness—exploring their underlying drivers, evidence-based treatments, and the critical role of communication and validation in improving patient outcomes.

Ilana Jacqueline

Panelist

Ilana Jacqueline is a patient, an advocate, and the author of the books Surviving and Thriving with an Invisible Chronic Illness and Medical Gaslighting: How to Get the Care You Deserve in a System That Makes You Fight for Your Life. Ilana was diagnosed with hypogammaglobulinemia at age nineteen and has since devoted her career to patient advocacy and disease understanding. She shares advice to help patients feel empowered in the exam room on Instagram and TikTok. You can learn more about her work on www.ilanajacqueline.com.

Liz Morasso

Panelist

Liz Morasso, LCSW, is a psychotherapist specializing in supporting teens, adults, and their caregivers navigating chronic and acute medical conditions. Diagnosed with lupus and RA at age 16, she combines personal experience and professional training to provide a unique approach to patient care, caregiver support, academic research, non-profit and hospital consultation, and community advocacy. Liz worked as a medical social worker in pediatric and adult healthcare settings for 13+ years and has presented nationally and internationally on the interdependence of health and mental health, as well as strategies to support caregivers and families. She transitioned to private practice in 2022 to prioritize quality time with her two cats, puppy, family, and friends.

Byrd Aruna

Presenter

Byrd is a certified sex and relationship practitioner specializing in disability, chronic illness, neurodivergence, communication, and more with their company Inclusive Intimacy with Byrd. They hold space for clients to explore topics around sexuality, relationships, and intimacy in an empathetic, collaborative environment.

Kerry Heckman

Presenter

Kerry Heckman, MSW, LICSW, is a therapist in private practice in West Seattle, who has a passion for working with clients who have chronic illness. She has a masters degree in social work from Loyola University in Chicago and is a licensed independent social worker in both Illinois and Washington State. Kerry was a high school social worker in the Chicago area for 10 years, before moving to Seattle in 2018. Kerry believes when it comes to chronic illness or any challenge, it is important to remember you do not have to face it alone. Accessing support and developing a community are some of the most helpful ways to cope with chronic illness. Kerry facilitates CCI's Rare Chronic Illness and APFED Connect support groups.

Kelly Hill

Presenter

Kelly Hill, LMHC is a licensed mental health counselor, AASECT certified sex therapist, and sexuality educator based in Washington State. In addition, she is a WA state approved clinical supervisor and the co-chair of the Sex and Disability Justice Special Interest Group (SIG). Her work is grounded in disability justice, trauma-informed care, and harm reduction, with a particular focus on chronic illness, sexuality, and identity. Kelly has a long history working in HIV care and advocacy and brings both professional expertise and lived experience to her clinical and educational work. She supports individuals navigating chronic illness, disability, neurodivergence, and shifts in sexual identity, and is especially committed to helping healthcare providers combat stigma and offer care that honors autonomy, dignity, and the full humanity of the people they serve.

Lisa Gray

Presenter

Lisa Gray, LMFT, is a licensed mental health professional with a private practice in the San Francisco Bay Area, where she specializes in high-conflict couples and chronic illness/pain. Lisa is the author of two books, “Healthy Conflict, Happy Couple” and “Thriving in a Relationship When You Have Chronic Illness”. Lisa is passionate about teaching couples to practice healthy conflict, so that their relationships can thrive and grow. Lisa reviews self-help books on her Instagram, Therapy Book Nook. She lives in the Bay Area with her family and three large dogs.

Tacha Kasper

Presenter

Tacha Kasper, LMFT, is a psychotherapist, CE educator, and creator of the Adaptive Healing Method™, a whole-person framework designed to support individuals living with chronic illness, medical trauma, and complex health challenges. With over two decades of lived experience alongside her clinical work, Tacha specializes in the intersection of physical health, mental health, and identity reconstruction. She is the founder of the Adaptive Healing Institute and Healing Point Counseling & Wellness Center, where she trains clinicians and supports clients navigating chronic illness, cancer, grief, and medical trauma. Tacha is a recognized speaker and educator who has presented for national and international organizations on chronic illness, grief, trauma, resilience, and whole-person care. Her work focuses on helping clinicians move beyond symptom management toward more integrative, compassionate, and effective approaches to healing.

Caylin Cheney

Presenter

Caylin Cheney, ARNP, is a board-certified family nurse practitioner with over seven years of experience providing compassionate, patient-centered care in the Seattle area. Rooted in individual autonomy, her practice is dedicated to creating affirming, inclusive spaces for people who have been marginalized or harmed by traditional medical systems, including members of LGBTQ+ community, women, and those who have experienced medical trauma. Caylin's own lived experiences with medical trauma have deeply shaped her approach to care, fueling her belief that healing is not only possible, but expansive. She is passionate about making healthcare more human, one patient at a time.

Renata Leverence

Presenter

Renata Leverence is a speaker and storyteller living with multiple chronic illnesses who brings honesty, humor, and heart to conversations about life in an uncooperative body. Drawing from lived experience, therapy, and the “school of life,” she speaks candidly about adaptation, identity, and finding ways to keep showing up—even when things are hard. Renata believes humor can coexist with grief, and that small, personal choices can restore a sense of agency in the face of chronic illness. Known for her relatable storytelling (and her hot pink and orange guide cane, Bertha), she helps audiences feel seen, understood, and less alone. Her work centers on practical insight, shared humanity, and permission to chuckle—even when life is hard.

Caroline Kasman

Presenter

Caroline Kasman is a Program Manager at Probably Genetic, focused on expanding patient-led access to genetic testing and reduce the burden and timeline of the diagnostic journey that so many people living with chronic and rare illnesses experience. Previously, Caroline worked in genomics research, state and federal public health initiatives, and clinical research organizations. She received her Master's of Science in Health Metrics Sciences from the University of Washington, geared towards the intersection of precision medicine and population health data. She also served on the CCI Board for 5 years and is excited to have the opportunity to share at this symposium.

Stephanie Swanson

Presenter

Stephanie Swanson is a certified life and career coach specializing in helping people with chronic illness, disability, and neurodivergence create work and routines that actually fit their lives. Her coaching style prioritizes energy, capacity, and sustainability to accommodate the complexities of living with chronic illness. She is an ICF-certified coach, biosystems engineer, former project manager, and director in an academic medical center. She is also the Founder and CEO of The Empower Network, a nonprofit supporting entrepreneurs living with chronic illness & disability. Her work focuses on rethinking accessibility through intentional design decisions that work on real days, not just the best days. She spoke at TEDx in 2025, "The Inevitability of Disability."

Rae Martens

Presenter

Coming from Calgary, Alberta, Canada, Rae's focus is on creating meaningful, collaborative relationships within healthcare and research communities. As a knowledge broker in health research, Rae works to build tools that empower individuals to critically engage with complex health information. She is passionate about fostering inclusive communities, emphasizing the value of lived experience, and promoting mutual investment in meaningful action. Rae is also the author of Joy on Joy, a children’s book focused on disability, joy, and inclusion. With a background in science communication, Rae is committed to making health and engagement accessible to all.

Leah Campbell

Presenter

Leah Campbell is a native Oklahoman, disability and rare disease advocate. She was diagnosed with neuromyelitis optica spectrum disorder in 2006 after a 17-year diagnostic odyssey, during which she became blind and a quadriplegic after being given medication for a disease she had been misdiagnosed with. Nevertheless, Leah earned a BA in Mathematics from Rhodes College and is the Community Support Coordinator for the Siegel Rare Neuroimmune Association. She is an ABLE National Resource Center Ambassador, serves as Chapter Advocacy Coordinator for the OKC Chapter of United Spinal, and is First Vice President and Legislative Director of the National Federation of the Blind of Oklahoma. She was instrumental in petitioning for Oklahoma House Bill 1711 to expand accessible absentee voting for blind and low vision Oklahomans.

Jody Ellis

Presenter

Jody Ellis, BCBA, CWIP, serves as Director, ABLE National Resource Center (ABLE NRC) for National Disability Institute. She has over 30 years of leadership experience in the nonprofit industry as a service provider for people with disabilities, with a focus on behavior analysis, transition from school to work, post-secondary education and workforce services. In her current role, she advances the ABLE NRC mission to educate, promote, and support the positive impact ABLE accounts can have in the lives of individuals with disabilities and their families. She is a Board-Certified Behavior Analyst and a Certified Work Incentives Practitioner with a master's degree in social work.

Vincent Bain

Presenter

Vincent Bain is a writer, speaker, and mindfulness advocate whose work bridges storytelling, meditation, and trauma-informed healing. After surviving an atypical brain tumor and navigating chronic conditions including neurological disorders and later being diagnosed with multifocal avascular necrosis, Vincent turned to meditation and writing as powerful tools for reclaiming self and narrative. He holds a B.A. in Communications and New Media and is completing an M.A. in English & Creative Non-Fiction Writing. His forthcoming guidebook and memoir, Atypical Love Story, explores identity reconstruction and resilience through illness. His published poetry collection, Dusk, explores themes of resilience, redemption, and spirituality through embodied, reflective verse. Vincent’s mission is to help others feel seen, empowered, and connected through mind-body practices and the healing power of their own voice.

Aisha Khorana

Panelist

Aisha Khorana is a third-year Ph.D. student in Counselor Education and Supervision at the University of Missouri–St. Louis, and a certified K-12 School Counselor. She currently practices as a mental health counselor supporting children, adolescents, and adults. Aisha has presented at regional and national conferences, with her research, presentations, and publications exploring topics such as Relational-Cultural Theory, self-compassion interventions, identity development, stress pride, adverse childhood experiences, and weight stigma. Her clinical training emphasizes incorporating a multicultural and trauma-informed lens within counseling. She is passionate about the deep-rooted mental health impact of chronic illness and is committed to providing research-driven, compassionate support for a population that deserves individualized, respectful care. As a doctoral student, researcher, and mental health professional in the community, Aisha brings a unique perspective to the mental health needs of individuals living with chronic illness.

Aaron Blight

Panelist

Aaron Blight, Ed.D., is an international speaker and consultant on caregiving, aging, and healthcare. He is the Founder of Caregiving Kinetics and has been recognized as a “Top 100 Healthcare Leader” by the International Forum on Advancements in Healthcare. Dr. Blight works with providers that serve aging and disabled populations to deliver workforce consulting, training for front-line caregivers, focus group research, and leadership advisory services. He also serves general employers that wish to support their employees with caregiving responsibilities at home. His career leading healthcare organizations spans more than two decades and includes the successful creation, development, and sale of a large home care company; a series of policy leadership positions at the Centers for Medicare & Medicaid Services; and the study of caregiving as a phenomenon of social science. His professional interest in caregiving came after he and his wife spent five years as “sandwich generation” family caregivers. Dr. Blight speaks with groups all over the world about caregiving. In workshops and conference talks, he invites participants to think deeply about the meaning and significance of their individual caregiving experiences. His book, When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative, received a Best Indie Book Award, an IPPY Award, and a Mom’s Choice Award. His caregiving models, derived from research and practical experience, have been used by therapists and caregiver support groups across the globe. Dr. Blight holds a bachelor’s degree from Brigham Young University, a master’s degree from the University of Baltimore, and a doctorate degree from The George Washington University. He serves as an Assistant Professor of Public Health at Shenandoah University, an honorary board member of the Well Spouse Association, an advisory board member of the Duet Meaning & Hope Institute, and an advisory board member of Seniors First.

Albert Freedman

Panelist

Al Freedman, PhD, is a psychologist, educator, and rare disease advocate with more than two decades of experience working with individuals and families affected by rare diseases and disabilities. Dr. Al is inspired by his personal journey as the father of Jack, who lived with spinal muscular atrophy (SMA) for 26 years as well as his professional training and experience as an educator to provide counseling and consultation. He works with families, advocacy organizations, pharmaceutical companies, healthcare organizations, and schools to create meaningful support systems and impactful change within the rare disease and disability communities.

Jeffrey Rabin

Presenter

Jeffrey A. Rabin is an Illinois attorney who has focused his practice on representing individuals seeking Social Security disability benefits since 1980. He founded Jeffrey A. Rabin & Associates, Ltd. in 1988 and represents clients nationwide at all administrative levels and in federal court. In December 2022, Mr. Rabin became Executive Director of NAMI Cook County North Suburban, where he oversees daily operations and expands community outreach. His involvement with NAMI began in 2012 as a board member of NAMI DuPage County, and he served as Board Chair from 2016 to 2021. Mr. Rabin has served in leadership roles with numerous advocacy organizations, including as Chair of the Alliance to End Homelessness in Suburban Cook County (2015–2017) and as a member-at-large of CHHRGE, which addresses the intersection of homelessness and access to medical care. In 2000, he was appointed by the U.S. Secretary of Health and Human Services to the Chronic Fatigue Syndrome Coordinating Committee. He has also served in leadership and advisory roles with the Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago, the Chronic Fatigue Syndrome Society of Illinois, and the Northern Illinois Multiple Sclerosis Society. From 1993 to 2001, Mr. Rabin served as an elected member of the Deerfield District 109 School Board, including one year as Board President. He has also served on the Board of Directors of Congregation B’nai Tikvah in Deerfield, Illinois. In 2013, Mr. Rabin received the Volunteer Advocate of the Year Award from the Lupus Foundation of Illinois. Mr. Rabin is a frequent national speaker on Social Security disability issues, regularly presenting for the National Organization of Social Security Claimants’ Representatives (NOSSCR) and numerous community, legal, and governmental organizations. He has testified before Congress, been featured on *60 Minutes*, and published articles on disability law. Mr. Rabin earned his Juris Doctor from DePaul University College of Law and a Bachelor of Journalism from the University of Missouri–Columbia. He lives in Lincolnshire, Illinois, with his wife Shari, a paralegal and community volunteer, and Milo, their funny Bernedoodle. They enjoy spending time with their seven grandchildren.

Chelsea Kramer

Panelist

Chelsea Kramer is a Licensed Marriage and Family Therapist and Perinatal Mental Health Certified. Chelsea's worked throughout the greater Seattle area in a variety of clinical settings for the last 14+ years. She currently works in virtual private practice focused on individuals and families struggling with grief, anxiety, and trauma around medical and reproductive health concerns. This includes clients facing acute and chronic illness, injury, or disability, as well as reproductive health concerns throughout the lifespan including fertility challenges, perinatal loss and menopause. Chelsea is passionate about creating safety for clients historically marginalized within the medical system.

Nichole Goble

Panel Moderator

Nichole Goble is the Director of Community Initiatives at Caregiver Action Network (CAN), where she oversees national programs, builds strategic partnerships, and develops resources that empower millions of family caregivers. Since joining CAN in 2017, she has advanced through multiple leadership roles—rising from Program Associate to Program Coordinator, then Associate Director—before stepping into her current position. In each role, Nichole has strengthened CAN’s ability to connect caregivers with vital support, training, and advocacy tools. Her career spans more than 15 years in the nonprofit sector, with expertise in program development, grant management, and community engagement. Before her work at CAN, Nichole served as Program Administrator at The National Alliance to Advance Adolescent Health, where she coordinated youth-focused health initiatives, and as Senior Program Associate at The Arc of the United States, supporting programs for individuals with intellectual and developmental disabilities. A graduate of Simpson College with a B.A. in Theatre, Nichole brings both creativity and strategic vision to her work. She is passionate about elevating the voices of caregivers and building inclusive, impactful programs that improve quality of life for families nationwide.

Riley Rheta

Panel Moderator

Riley Rheta, MSW, (they/them) is a housing case manager at Compass Housing Alliance. There, they empower and advocate for people of all ages, backgrounds, and abilities. Riley also facilitates CCI's "Living with Migraine" peer support group each month. Riley is chronically ill and neurodivergent, and they are passionate about empowering people through connection and education. Outside of work, Riley enjoys fiber art, reading, and spending time with their dog, Koda.

Kimberley John-Morgan

Panelist

Kimberley John-Morgan is a passionate freelance writer, non-profit leader, and steadfast social justice champion committed to centering marginalized voices. As someone navigating a lifetime with a chronic illness, Kimberley possesses a deep empathy for those facing dynamic health challenges. Through all of her endeavours, Kimberley works to affirm vulnerable populations and foster communities of care.

Michelle Haynes

Panelist

Michelle Haynes is a mental health professional who works at a community college supporting students’ mental health and well-being. She provides counseling to students navigating mental health challenges, academic pressures, and life transitions to help them improve their mental health, quality of life, well-being, and sense of purpose. Michelle lives with chronic illness. She understands the difficulties of navigating the healthcare system, coping with uncertainty, and learning to pace herself while practicing self-care and self-compassion. She encourages others living with chronic illness to prioritize self-care and self-compassion for their mental and physical well-being, while advocating for themselves to seek compassionate, collaborative care within the healthcare system.

Nate Dorband

Panelist

Nate Dorband, He/They, 29, Chicago Suburbs. Beginning in 2022 Nate was diagnosed with Dysautonomia, POTS, MCAS, IBS, and suspected Endometriosis after progressive development starting in childhood. Prior to his illnesses escalating, he obtained a BA in Theatre Directing, Design & Technology, and these days he likes to spend his time reading.

Charlotte Bayala

Panelist

Charlotte Bayala is a speaker and the creator of The Cancer Caregiver Podcast and Caregiver Breathing Room. She draws from over a decade of caring for her husband, who continues to live with cancer, along with her background in yoga and meditation, to design practical tools that help people stay steady under sustained pressure. Her work focuses on supporting those carrying invisible workloads and helping organizations build more human-centered systems.

Alice Allen-Redfern

Panel Moderator

Alice Allen-Redfern, LICSW is a Licensed Clinical Social Worker, psychotherapist, and Co-Founder of Nolia Health, where she specializes in chronic illness, brain health, aging, and family caregiving. With over a decade of experience supporting individuals and families affected by dementia and complex chronic conditions across the U.S., Canada, and the UK, her work is grounded in a social justice lens that centers and elevates the often invisible labor of family caregiving within healthcare and policy structures. . In her role, Alice leads clinical strategy, care model design, and clinician training, while remaining closely connected to the lived experiences of caregivers through her direct clinical work. Her work focuses on bridging the gap between healthcare systems and the everyday realities of caregiving, with an emphasis on emotional support, practical navigation, and equitable access to care.

Cheryl Marker

Panelist

Cheryl Marker is a chronic illness and pain advocate, content creator, and melanoma survivor. She shares her experience living with multiple chronic conditions to help others feel seen, heard, and less alone, while raising awareness for both chronic illness and skin cancer. Through her platform, she creates honest, relatable content and offers practical guidance on navigating the healthcare system and advocating for proper care. She is also passionate about sun safety and skin cancer prevention, using her experience to emphasize the importance of early detection. Cheryl is a self taught digital artist who incorporates her artwork into her content to express the often invisible realities of chronic illness. What began as a creative outlet and distraction from daily pain has become a meaningful way she connects with the chronic illness community.

Richie Kahn

Presenter

A health policy professional by training, clinical researcher by trade and patient advocate for those experiencing Charles Bonnet Syndrome, Richie Kahn has spent the last 16 years working to reduce the time it takes to bring promising new treatments to the patients that need them most. As Co-Founder & COO of Canary Advisors and Canary Concierge, Richie strives to better align clinical development programs with patient wants and needs. He lives in North Carolina with his wife, Nina, and their rescue dogs, Gloria and Rosie.

Zach Berlon

Presenter

Zach Berlon is a Clinical Research Associate at Medpace, where he supports the advancement of clinical trials that bring new therapies to patients. He began his healthcare career after earning his nursing training from Kettering College, going on to work in high-acuity inpatient settings including trauma care and the Cardiac ICU. He also served patients on the front lines of the COVID-19 pandemic in an outpatient clinic, gaining a broad perspective on care delivery across healthcare environments. Building on this clinical foundation, he transitioned into research, where he now plays a key role in ensuring the integrity and success of clinical studies.

Amanda Berlon

Presenter

Amanda Berlon is a public health communications professional dedicated to making complex health information clear, accessible, and actionable for diverse audiences. She graduated cum laude from Baldwin Wallace University with a Bachelor of Science in Public Health, grounding her work in community health and health equity. Amanda’s passion for global health is reflected in her nearly 3,000-mile bicycle ride from San Francisco to Boston over 63 days, raising funds to support health programming in Rwanda. In 2022, after a COVID-19 infection led to a diagnosis of Rheumatoid Arthritis, Amanda became a patient advocate and proud “spoonie,” using her voice to support others navigating chronic illness. She now works closely with the Arthritis Foundation on key advocacy efforts and serves as a Walk to Cure Arthritis Committee Chair in Cincinnati, where she lives with her husband and their Great Dane, Tiny. In her free time, she enjoys watching documentaries, discovering new coffee shops, and exploring new ways to craft.

Sarah Cohen Solomon

Presenter

Sarah Cohen Solomon, MD, FAAP, is an American Board of Pediatrics (ABP) Board-Certified Pediatrician at the University of Virginia's EDS and Hypermobility Disorders Clinic specializing in hypermobile Ehlers-Danlos Syndrome and associated conditions such as mast cell activation syndrome (MCAS), dysautonomia, cervical instability, and Chiari malformation. Her work is informed by her own lifelong experience with these disorders. She trained at Sidney Kimmel Medical College and Nemours Children’s Hospital, presents nationally on hEDS-related topics, serves on the Awareness for POTSies Medical Board and the AAP Council on Children with Disabilities EDI Subcommittee, and mentors trainees with chronic illness and disabilities.

Barry Jacobs

Panelist

Barry J. Jacobs, PsyD, is a clinical psychologist, family therapist, and healthcare consultant. A former magazine journalist, he is the author of The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006) and coauthor with his wife, Julia L. Mayer, PsyD, of AARP Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family (Hachette, 2016), AARP Love and Meaning After 50: The 10 Challenges to Great Relationships—and How to Overcome Them (Hachette, 2020), and The AARP Caregiver Answer Book (Guilford, 2025). He has also written a self-help column for caregivers for AARP.org since 2013. A board member of the Caregiver Action Network, a national family caregiver advocacy and support organization, and a former director of behavioral sciences for the Crozer Health Family Medicine Residency, he maintains a psychotherapy practice in Media, Pennsylvania, specializing in supporting individuals with chronic and serious illness and their caregivers. For seven years, he was the primary caregiver for his stepfather with Alzheimer’s disease and mother with vascular dementia.

Melissa Talwar

Panelist

Melissa Talwar serves as Executive Director of the Fibromyalgia National Health Organization. She is an award-winning functional medicine health coach, patient advocate, and will soon complete her Master’s in nursing. Diagnosed with fibromyalgia at age 14 following a sports injury, Melissa is committed to supporting the chronic illness community through education, advocacy, and collaborative care.

Jacquelyn Revere

Panelist

Jacquelyn Revere heals her wounds through words. A young woman with a stutter and a whole lot to say, her path took a defining turn when she became a young caregiver for her mother and grandmother, both of whom battled dementia. In her fourth year of caregiving, she began sharing her journey on TikTok (@MomOfMyMom), building a substantial following and using her platform to connect with caregivers who had never seen their experience reflected back to them. Revere's story resonated widely, earning her an Op-Ed in the LA Times, features in The New York Times, NPR, and Ebony Magazine, and a feature in Caregiving the Documentary, produced by Bradley Cooper and PBS. She also created an award-winning storytelling series with AARP. She is the founder of Mom of My Mom and co-founder of The Care Den, an online membership community where caregivers come to belong, find support, and rediscover themselves beyond their caregiving role. Now four years into her own post-caregiving recovery, Revere consults caregivers through the before, during, and after stages of care.

Kaly Ryan

Panel Moderator

Kaly Ryan is an award-winning Industrial Designer (BDes) with over a decade of experience in furniture design and manufacturing. Passionate about inclusive design and the intersection of design and health, she founded Capella Design in 2022, the first lifestyle brand reimagining home mobility products as beautiful furniture and accessories. In addition to leading Capella’s product development, Kaly consults with homeowners, designers, and builders to integrate accessible design principles into residential and commercial spaces. Through her work, she is redefining accessible design by reducing stigma and supporting both physical and emotional well-being at home.

Cara O'Donnell

Presenter

Cara is dedicated to improving the lives of those living with chronic illnesses. With a background in project management, Cara brings a wealth of experience in healthcare management and patient advocacy. She holds a Project Management Professional (PMP) certification and works at Mass General Brigham as a Project Portfolio Manager, where she oversees a variety of healthcare projects. Cara is currently pursuing her Masters in Healthcare Administration and simultaneously pursuing a Healthcare Leadership Graduate Certificate to further enhance her expertise. As an ulcerative colitis patient who lost her entire colon to the disease, Cara is passionate about improving patient access to care and advocating for mental health support. She has been actively involved in community outreach and educational programs. Cara joined the Center for Chronic Illness to further her commitment to supporting individuals and families affected by chronic health conditions. In her free time, Cara enjoys hiking, running, and traveling, and is honored to contribute to the mission of the Center for Chronic Illness.

Emily Woitas

Presenter

Emily serves on the CCI board with a strong commitment to community and universal accessibility. Inspired by the organization’s mission, she works to expand its impact for individuals living with chronic illness, bringing both lived experience and a background in community work to inform her perspective. She is a car insurance product manager at Lemonade, specializing in telematics and advanced analytics. Emily leverages data-driven insights in her professional work and applies that same strategic lens to advancing CCI’s mission. She lives in Seattle with her family and is proud to support CCI’s growing national presence.

Eileen Davidson

Panel Moderator

Eileen Davidson, also known as Chronic Eileen, is a patient advocate, patient partner in research, writer, and speaker based in Vancouver, British Columbia. Living with rheumatoid arthritis and non-radiographic axial spondyloarthritis, she uses her voice to raise awareness and promote education around chronic illness and disability. Eileen has written over 150 articles for platforms including CreakyJoints, Healthline, and The Arthritis Research Canada newsletter, and her blog has been recognized as one of the top arthritis blogs by HealthCentral, Everyday Health and Healthline. Eileen co-hosts a podcast called “Rheumer Has It” which dispels misinformation about rheumatic diseases. Since 2018 she has actively served on the Patient Advisory Board for Arthritis Research Canada and works as the Educational Media Assistant for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis).