President: Mika Jayne Covington
Mika Jayne Covington (she/her) lives with cystinosis. She studied Psychology and German at the University of Iowa. However, because of her health, she has had to put her education on hold. She serves on the Patient and Family Advisory Board at the University of Iowa Hospitals and Clinics (UIHC). She served on the One Iowa Transgender Advisory Board. Mika is an advocate for patient-centered care and healthcare equity. She is a co-founder with her friend Rebekah Palmer of Next Generation of Cystinosis (NGC). Currently, she serves as President of the Board of Directors.
Vice-President for Organizational Development: Mika Covington (Acting)
Vice-President for Fundraising:
Vice-President for Peer to Peer Support:
Vice-President for Advocacy and Awareness: Rebekah Palmer
Rebekah Palmer (she/they) holds a degree in Professional Communications and Emerging Media from UW-Stout in Menomonie, WI. Additionally, she has a religious degree in parochial school teaching and secretarial training. She is a dedicated rare disease educator and a published author, and her articles have appeared on the rare disease website, PatientWorthy, the digital magazine Rare Revolution, and #RareIs.
Secretary: Katie Swafford
My name is Katie Swafford, I am 34 and living with cystinosis. I was born in and continue to live in the Pacific Northwest. My mom donated a kidney to me in 1999. After high school, I attended college to become a Veterinary technician and have worked in small animal hospitals and volunteered with local animal welfare organizations. My older sister Sarah was also born with cystinosis, she passed away in 2014 at the age of 31. Shortly after, I lost sight in my right eye.
“The wound is the place where the light enters you,” is my favorite quote from the Persian poet Rumi. Suffering brings illumination. Living with cystinosis has been hard, it has taken many things from me. But, I am grateful for everything it has taught me. I have recently moved to eastern Oregon where I am working for a company of social workers that are contracted to the Department of Human Services involved in child welfare.
Treasurer: Bob Dean
Bob Dean (he/him) is part of an extended family whose genetic mix includes Crohn’s Disease, Alzheimer’s, various forms of cancer, Ehlers-Danlos syndrome (EDS), and depression.
Bob is a retired past, having worked with people of all ages providing pastoral care, preaching, teaching, youth leadership, and staff supervision in churches. His continuing education experiences include classes and workshops in the areas of crisis, marriage, and grief counseling, youth ministries, anger management, and post-traumatic stress counseling.
He has served on District Hispanic Ministries Boards, Centro Latino of Council Bluffs, IA, Habitat for Humanity chapters, Hospice Boards, and ecumenical and interfaith groups. His interests include kayaking, reading mysteries, and making the perfect s’more al pastor.
At-Large: Amanda Leigh
Amanda Leigh is an author, freelance designer, and blogger. She advocates for Mental Health and rare disease awareness, as well as domestic violence awareness, and literacy. She graduated with a BA in English and Communications and was the Assistant Managing Editor of her college Literary Magazine. She has a cat she adores and also loves Psychology, music, and cooking. She’s very excited to be a part of this new endeavor.
At Large: Sabri Sky
Sabri Sky (she/her, zhe/hir, they/them) lives with Joint Hypermobility Syndrome/Ehlers -Danlose Syndrome (EDS-h or hEDS). Zhe has worked with nonprofits, on issue-based campaigns, and is active in hir community in organizing and writing. Their educational background includes Women and Gender studies including sociological training. Currently, she is on the Johnson County National Center for Mobility Management (NCMN) Transit Grant Team, and she is a board member of Corridor Community Action Network (CCAN). Zhe wants to improve medical care and public services to function for all people.
Medical and Scientific Advisor:
Ana A. Francisco, Ph. D, (she/they), is an adjunct assistant professor at Yeshiva University (Clinical Psychology Graduate Program). She is also a research assistant professor at the Cognitive Neurophysiology Laboratory, Albert Einstein College of Medicine. She has training in Clinical Psychology and Cognitive Neuroscience. Her work focuses on characterizing brain function in rare genetic (22q11.2 deletion syndrome and cystinosis) and neuropsychiatric (schizophrenia) conditions. She focuses on different processes (executive function, sensory processing) and mainly utilizes EEG and neurocognitive tools to inform her research.