President: Mika Jayne Covington
Mika Jayne Covington is 29 years old. She was diagnosed with cystinosis at around 10 months old. She is a college student at the University of Iowa studying psychology and German. She is a sexual assault survivor, a human rights activist, a feminist, a student, and a social justice fighter. She is also a blogger and you can find her blog where she shares her story here: www.mikacovington.com
Vice-President for Organizational Development: Mika Covington (Acting)
Vice-President for Fundraising: Robert Dean
Vice-President for Peer to Peer Support:
Vice-President for Advocacy and Awareness: Rebekah Palmer
Rebekah Palmer is a senior studying Professional Communication and Emerging Media at the University of Wisconsin – Stout. She holds a bachelor’s degree in secondary Christian education with English and business emphasis. She currently writes from rural Wisconsin, and her articles have appeared on the rare news website PatientWorthy. She volunteers in her local community as a tour guide in historical buildings and participates in the performing arts. She has three books available to date on Amazon and/or Aneko Press. Her author’s information can be found on Goodreads. Her rare disease blog curation address is www.cystinosisociety.wordpress.com.
Secretary: Katie Swafford
My name is Katie Swafford, I am 34 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 the 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 bring 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: Robert Dean
Bob Dean is a retired pastor, having worked with people of all ages providing pastoral care, preaching, teaching, youth leadership, and staff supervision in churches.
He also worked for the United Methodist Publishing House and served as an adjunct professor teaching Introduction to Communication and Pastoral Administration courses.
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 different boards and agencies in his churches and communities, including District Hispanic Ministries Boards, Centro Latino of Council Bluffs, Habitat for Humanity chapters, Hospice boards, and ecumenical and interfaith groups.
His educational background includes receiving a Master of Divinity from Iliff School of Theology in Denver, Colorado, and a Bachelor of Science in Psychology from Iowa State University in Ames, Iowa.
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.