Tinu Abayomi-Paul

Tinu Abayomi-Paul is a writer, disability advocate, Black women’s rights activist, and the founder of Everywhere Accessible. As an advocate and community-builder on social media, she maintains a master list of Twitter chats and patient-facing hashtags to help the chronic illness and disability communities easily find resources and each other. Tinu has chronic pain related to chronic lymphocytic leukemia. She is also a member of Global Healthy Living Foundation's COVID-19 Patient Leadership Council Board as well as the Women Who Tech's US Start-Up Advisory Board.

Cancer (Chronic Lymphocytic Leukemia), Migraine.

Sarah Blahovec

Sarah Blahovec is a chronically ill disability advocate. Diagnosed with severe Crohn’s Disease at age 15, Sarah has always had a passion for advocacy and focuses her advocacy on voting accessibility and teaching people with disabilities to run for elected office. She has worked as a political consultant and is currently the Civic Engagement and Voting Rights Organizer for the National Council on Independent Living.

Severe Crohn’s Disease.

Connie Chen

Connie Chen is a graduate student in the School of Divinity at Harvard University. Her work focuses on representations of embodiment and in religion and literature. She examines disability and religion in the writings of Flannery O'Connor and Ernest Hemingway. Connie recently published the essay, “The Deaths of Bishop Rayber in The Violent Bear It Away,” in the Aug. 2020 issue of The Flannery O’Connor Review. Connie is also an accomplished pointed-pen calligrapher, the youngest of the 14 people in the world who have earned the Master Penman title. Connie lives with lupus and writes eloquently about the experience of living with pain and she is presently designing a curriculum on disability.

Lupus.

Brooke Feldman

Brooke Feldman is a widely recognized speaker, advocate, consultant, and writer on issues related to drug user health, addiction, recovery, social justice, and improving behavioral healthcare systems. Brooke is the Director of Recovery Support Services for CleanSlate Outpatient Addiction Medicine. She previously served as a national consultant on behavioral health systems transformation and played various roles in in Philadelphia’s behavioral health system. Brooke also currently serves on the board of Angels in Motion (AIM), a street-based harm reduction and recovery support organization. Brooke embraced her own recovery at the age of 24 after spending her adolescent years in and out of behavioral health institutions and Philly’s juvenile justice system. For the past 15 years, she has managed her wellness and overcome living with a substance use disorder, halting the intergenerational transmission of addiction that claimed her mother’s life at a young age.

Addiction, Substance Use Disorder, Recovery.

Chris Freeman

Chris Freeman has struggled with pain his whole life. Born weighing just under 3 pounds, he has had many struggles as a child, including scoliosis, spina bifida, hyper mobility and dyslexia. In 1993 Chris suffered a workplace accident that required a lumbar spinal fusion which failed leaving him in immense pain. Within a few years incremental pain spread throughout his body leading to a diagnoses of fibromyalgia and most recently a diagnoses of facial neuralgia. However, despite all his struggles he was still able to graduate with a Bachelor’s degree in Religious education in 1998, and he earned a masters certificate in Christian Education in 2010. 

For the past 7 years, Chris has been raising awareness about invisible illnesses and bringing comfort, kindness, and support to those on Twitter under the name @ChronicPainDad. 

Spina Bifida, Scoliosis, Facet Joint syndrome, Degenerative Disc disease, Failed Back Surgery syndrome, Fibromyalgia, Facial Neuralgia, Migraine, Osteoarthritis, Hypermobility

Anne Fuqua

Anne Fuqua is a patient advocate with a background in nursing. She is also a wheelchair user with severe chronic pain from generalized dystonia, a neurological disorder that causes involuntary movements and painful muscle spasms. When she was unable to tolerate medications commonly used for her condition, her providers discovered that prescription opioids dramatically reduced her spasms. With the medication, her body became less rigid and jerky, her fingers no longer clenched, and her pain was less severe. Anne is a fierce advocate for the appropriate use of opioid pain medication and she written about her experience for such publications as The Washington Post. 

Primary Generalized Dystonia.

Jed Finley

Jed Finley is a special educator teacher and ankylosing spondylitis (AS) patient leader and advocate. His story has appeared in such national publications as the New York Times, in the book, Made to Overcome: Chronic Illness Edition, and as part of the ankylosing spondylitis awareness campaign “My Back Is Killing Me” from CreakyJoints. He is the founder of the online Facebook support group Living With Ankylosing Spondylitis and hosts local AS group meetings. He is also the co-founder of #HighRiskCovid19.

Ankylosing Spondylitis (AS).

Ryan Hampton

Ryan Hampton is an author, American political activist, and person in recovery from a decade-long opioid addiction. He is a leading voice in changing the national dialog about addiction and recovery through social media, writing, and advocacy. Ryan has testified before Congress and was part of the core group issuing the first-ever U.S. Surgeon General’s report on addiction in 2016. He has been featured by—and is a contributor to—such national media outlets as USA Today, MSNBC, Fox and Friends, the New York Times, NPR, HLN, Vice, Forbes, Slate, HuffPost, The Hill, the Wall Street Journal, and others. His first book, “American Fix — Inside the Opioid Addiction Crisis and How to End It” published by St. Martin’s Press, was released in August 2018.

See the op-ed that Ryan and Kate co-authored about the need for the pain and recovery community to come together, here.

Addiction, Opioid Use Disorder, Recovery. 

Frank H. Gawin, M.D.

Valerie Gawin, M.S.P.H., R.D.N., L.D.

Frank H. Gawin, M.D. is an addiction expert. He founded the first research clinic devoted solely to cocaine addiction at Yale University in 1982. He has authored approximately 100 scientific articles on addiction and has received a dozen National Institute on Drug Abuse research grants. His work has appeared on ABC, CBS, NBC, and CNN, and in Newsweek, The New York Times, Washington Post, The Readers Digest and Scientific American. Trained at the University of California at Berkeley, Stanford University and Yale University, Dr. Gawin served on the Faculty at both Yale University and UCLA. His academic research career ended during its second decade due to disabilities related to post-Lyme disease neuro-borreliosis – complications arising from an infection of the central nervous system that occurs in 2-4% of Lyme disease cases. He has been subjected to forced opioid dose tapering.

Post-Lyme Disease Neuro-Borreliosis.

Valerie Gawin, M.S.P.H., R.D.N., L.D. has been a clinician and researcher as well as a professor at Glendale College and Santa Monica College. As a clinician, she worked in drug inpatient rehabilitation education and care. As a researcher, she supervised multiple clinical trials, including buprenorphine's multi-site phase three trial, and medication treatments for stimulant abuse at UCLA. Valerie attended Loma Linda University and UCLA School of Public Health. She has been a chronic pain patient for more than 14 years, and has struggled to obtain opioid pain medication as a legacy patient. She serves on the board of the Hawaii Opiate Initiative at the University of Hawaii.

Post-Legionnaires Syndrome Fibromyalgia and Neuropathy, Arachnoiditis, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CFS), Ehlers Danlos Syndrome, Rheumatoid Arthritis.

Frank and Valerie Gawin are a married couple, both of whom suffer from severe chronic pain. 

Charis Hill

Charis Hill is an award-winning queer disabled chronic disease advocate, writer, speaker, and model living with Axial Spondyloarthritis (formerly Ankylosing Spondilitis), autism, major depressive disorder, anxiety, and post-traumatic stress disorder. Charis’ story has been featured in dozens of publications and media outlets including Arthritis Today magazine, Mother Jones, CNBC, the Associated Press, and in the documentary film Becoming Incurable. Charis has also been instrumental in creating spondyloarthritis disease treatment guidelines; designing and conducting patient-centered rheumatological research; forming international criteria for disease treatment outcomes; and creating research guidelines. They are involved in national/international advocacy, and are the co-founder of #HighRiskCovid19. 

Axial Spondyloarthritis (formerly Ankylosing Spondilitis), Autism, Major Depressive Disorder, Anxiety, and Post-Traumatic Stress Disorder.

Sonya Huber

Sonya Huber is the author of six books, including the award-winning essay collection on chronic pain, Pain Woman Takes Your Keys and Other Essays from a Nervous System and the forthcoming Court Date: A One-Day Memoir. As an activist, she is the founder of the 2017 online Disability March and has been involved in labor, health access, and racial justice work for thirty years. She has rheumatoid arthritis and is a recovering COVID-19 long-hauler. Her work has appeared in the New York Times, Brevity, Creative Nonfiction, and other outlets. She teaches at Fairfield University and in the Fairfield low-residency MFA program. More information is available at www.sonyahuber.com.

Rheumatoid Arthritis, Long-haul COVID-19.

Quána Madison

Quána Madison is an artist, consultant, mindfulness teacher and arts-based wellness instructor. Expressive arts revived her soul after enduring cancer previvor treatments and developing disruptive life-changing chronic illnesses. She has fibromyalgia, chronic pain syndrome, chronic fatigue syndrome/myalgic encephalomyelitis, peripheral neuropathy and autoimmune disease. She is the author of the memoir, LoSing Strength & Dexterity, a journey of pain, suffering, creative coping and searching for inner peace told through letters, poetry and reflections. As a mindfulness teacher and arts-based wellness instructor, she combines inner wellness practices with expressive arts to promote physical, emotional, mental, and energetic well-being. A graduate of New York University and Colorado College, Quána holds a MA in Education and a BA in Philosophy. More information is available at www.quanamadison.com

Preventive surgeries for Breast, Uterine, and Ovarian Cancers (BRCA1, ATM and NBN genetic mutations), Fibromyalgia, Peripheral Neuropathy, Autoimmune Disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Richard Martin

Richard Martin is a former hospital pharmacist who retired due to disability related to his intractable pain. As a hospital pharmacist, Rick worked with oncologists managing cancer pain with appropriate medication that included prescribed opioids.  He has also worked as a retail pharmacist. Rick has undergone numerous surgical procedures to remediate his pain, including a total hip replacement, an artificial disc replacement, and a sciatic nerve decompression.  For many years, he was able to work by managing his pain with NSAIDs and high dose prescription opioids. After his primary physician stopped prescribing his pain medication and a new pain management physician involuntarily reduced his opioids, Rick was forced to stop working. He is currently being treated with prescribed opioids, but at a dose that is lower than he finds effective. Rick is a vocal advocate for the appropriate prescribing of opioids. He has spoken, written, and provided testimony in Nevada, where he was also involved with George Knapp’s series highlighting the plight of pain patients. He testified federally at the FDA's "Patient-Focused Drug Development for Chronic Pain" public meeting in Washington DC July, 2018.

Osteoarthritis of the hip, Degenerative Disc disease, Piriformis Syndrome. 

Syreeta Nolan

Syreeta Nolan is a disability justice advocate. She serves as co-founder of Disabled in Higher Education on Twitter (@DisInHigherEd), Board Member with HealthAdvocateX, and founder of JADE (Justice, Advocacy and Disability Education) as a holistic disabled justice platform focused on empowering disabled students, faculty, staff and alumni through community and support. Her lived experience as a Black, Disabled, bisexual woman have informed her advocacy goals along with her career goals. Living with chronic pain from various physical disabilities, she finds that her mental disabilities also impact her pain levels as well as how she moves through her life. She hopes to expand the reach of health advocacy while bringing disability advocacy and health advocacy together along increasing disability awareness and inclusion. Syreeta graduated with her Bachelor’s in Human Health Psychology from the University of California San Diego and hopes to continue to obtain a PhD in Public/Health Policy or Prevention Science toward her goal to transform the mental health field through comprehensive preventive systems similar to what we have in other health areas.

Fibromyalgia, Gastroparesis, Myasthenia Gravis, Attention Deficit Hyperactivity Disorder (ADHD), Post-Traumatic Stress Disorder (PTSD).

Dania Palanker

Dania Palanker is an assistant research professor at the Center on Health Insurance Reforms at Georgetown University’s Health Policy Institute. She analyzes state and federal health insurance market reforms with an emphasis on insurance benefit design, access to health care, and coverage for chronic health conditions. Dania has a long history in health advocacy, having worked previously in health-related rights at the National Women’s Law Center and the Service Employees International Union (SEIU). She has had chronic pain for most of her life, beginning at age 14. Dania holds a J.D. from Georgetown University and an M.P.P. from the Kennedy School of Government at Harvard University.

Small Fiber Neuropathy, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Autoimmune Disease.

Amy Partridge

Amy Partridge is a patient advocate and a person with intractable pain.  She formerly served as Director of Implementation and Operations for UPMC Health Plan in Pittsburgh, Pennsylvania, where she assisted national clients with launching new commercial and Medicare Advantage Health Plans. She was also responsible for implementing the Third-Party Administrator services, and had oversight of ongoing operations, reporting, and performance guarantees for those plans. In 2016, Amy stopped working due to disability related to her intractable pain and incurable conditions. Since then, Amy has become a vocal advocate for people in pain, and has provided testimony to both the Food and Drug Administration’s Patient-Focused Drug Development Panel in 2018 and the Health and Human Services Pain Management Best Practices Inter-Agency Task Force in 2019.

Adhesive Arachnoiditis, Ehlers Danlos Syndrome, Failed Back Surgery Syndrome.

Sara Ruh

Sara Ruh is an advocate, artist, writer, keynote speaker, and social media maven who was born with Down Syndrome. Sara has acted on stage and in commercials and modeled. She inspired a children’s book written by Debra Ruh, her Mother, and has had her art work displayed in several art exhibits, including art shows at Capital One, SunTrust Bank and the VABLN. She is also the Chief Inspiration Officer for Ruh Global Impact.

Down Syndrome.

Diane Talbert

Diane Talbert is an advocate, writer, and the founder of PowerBeyondPsoriasis.com.  Diane has lived with psoriasis for more than 50 years and she has had psoriatic arthritis for more than 20 years. She has written for such publications as The New York Times, Everyday Health, Health Union and Patients Rising, and spoken to policymakers locally and nationally, including the Food and Drug Administration and legislators on Capitol Hill. Diane advocates in order to fight the stigma associated with pain and chronic diseases.

Psoriasis, Psoriatic Arthritis.

Brooke Vittimberga

Brooke Vittimberga is a patient, writer, and advocate. Following her bone marrow transplant in 2015, she began writing about her experiences with illness, pain, and survivorship. In 2019, she served as one of five national ambassadors for the St. Baldrick’s Foundation, where she shared her experiences as a pediatric cancer patient and survivor. 

Alongside her patient advocacy, Brooke studied Human Biology at Stanford University and completed an honors thesis in pediatric immunotherapy. She plans to continue advocating for patients as both a writer and eventual physician. 

Acute Myeloid Leukemia (AML), Bone Marrow Transplant (BMT), Graft Versus Host Disease (GVHD), and Avascular Necrosis (AVN).

Jemela Williams

Jemela Williams is a Sickle Cell Disease (SCD) warrior and a patient advocate. She is passionate about helping others navigate the challenges of living with SCD, while inspiring them to live their most phenomenal lives. Jemela is also committed to raising awareness about invisible illnesses and to fighting the stigma associated with SCD. She serves on the Board of Directors of Uriel E. Owens Sickle Cell Disease Association of the Midwest (Sickle Cell Midwest) and she was recently featured in the powerful campaign, sparksicklecellchange.com. Her story of growing up with Sickle Cell Anemia (Hemoglobin SS) has been featured in numerous articles and podcasts. Jemela maintains an active twitter presence, and engages in events that foster friendship and belonging among people with SCD. She is also a Court Appointed Special Advocate for children, assisting with their adoption, foster placements, and trauma.

Sickle Cell Anemia (Hemoglobin SS).