RARE Daily

Rare Leader: Mika Covington, President, Next Generation of Cystinosis

December 10, 2020

The Basics
Name: Mika Covington 

Title: Founder and president

Organization: Next Generation of Cystinosis

Social Media Links:

Disease focus: Cystinosis is an ultra-rare genetic metabolic disease that affects every cell in the body. It affects every organ system in the body including the kidneys, eyes, liver, brain, thyroid, and many more. It is a lysosomal storage disease caused by a mutation in the CTNS gene. It’s a persistent, progressive disease that continues to cause damage even after kidney transplant. There are an estimated 500 people in the United States and 2,000 people worldwide with the condition.

Headquarters: Ankeny, Iowa

How did you become involved in rare disease: I live with the disease, cystinosis. I’ve seen that there are gaps in what the other two main organizations offer and I decided that we needed to do something focused solely on adults living with cystinosis.

Previous career: Working as a political organizer.

Education: Currently studying psychology and German at the University of Iowa

The Organization
Organization’s mandate: To be an organization run for and by adults with cystinosis.

Organization’s strategy: We are going to provide social support to adults living with cystinosis—emotional and psychological support. This is going to be more structured, like having a licensed social worker or psychologist in the mix, providing scientific and medical education to adults. The education would be directly specific to our needs as adults.

Funding strategy: We are funded right now by a grant and individual contributions.

What’s changing at your organization in the next year: We are at the stage of getting established and getting our 501(c)4. Next year we’re hoping to run our programs and hold our board meetings in person, if COVID allows. We do plan to do some lobbying of Congress and local and state governments.

Management Style
Management philosophy: Collaboration. Not having one person do all the work and delegating.

Guiding principles for running an effective organization: Accountability, collaboration, and honesty. Own up to any mistakes made and be honest about intentions and give honest and open feedback.

Best way to keep your organization relevant: Keep having open and honest dialogue about the specific issues that affect adults.

Why people like working with you: I am very focused and driven to accomplish my goals. I’m passionate about the work I do, and I express care and vulnerability by being open about the limitations of living with a rare disease.

Mentor: My grandmother Betty Barry. She helped teach me how to read and write. She was always there supporting me and teaching me how to be persistent and not let the issues I have keep me down.

On the Job
What inspires you: Mostly it is to make sure that our voices are heard as adults. I’m also inspired by the work that adults are doing coming together. It’s knowing that we can do something ourselves.

What makes you hopeful: I have hope because of my interactions with the elected leaders I’ve spoken to and their willingness to fight for us as rare disease adults. I also have hope from seeing the interest that’s forming around this new organization.

Best organization decision: Asking for a grant from Horizon Pharmaceuticals.

Hardest lesson learned: Accepting that living with a rare disease like cystinosis interferes with my ability and the board’s ability to work and accomplish goals. We have to be realistic with each other that the disease does interfere.

Toughest organization decision: Establishing the organization and knowing that it may ruffle feathers in the cystinosis community because there are already two established organizations.

Biggest missed opportunity: Having our own support group established. We currently have an association with the Center for Chronic Illnesses, which has an online support group. We have been pushing people to go to that instead of having one run by ourselves.

Like best about the job: Being able to lift up other voices and inspire them to make sure their opinions are heard.

Like least about the job: Dealing with individuals who may think we are seeking to compete with or undermine other organizations.

Pet peeve: Procrastination

First choice for a new career: This is a part-time volunteer position right now because I’m in school part-time and full-time position maintaining my health. I plan to go to graduate school to become a clinical psychologist.

Personal Taste
Most influential book: Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead by Brené Brown

Favorite movie: The Star Wars saga

Favorite music
: KillerPilze, a German punk band

Favorite food: Spaghetti

Guilty pleasure: Peanut butter cups

Favorite way to spend free time: Reading

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