Name: Katie Stevens
Organization: Dyskeratosis Congenita Outreach
Disease focus: Dyskeratosis congenita (and telomere biology disorder) is an extremely rare, genetically inherited multi-symptom disorder. It is estimated to occur in one out of 1 million people worldwide. It can be characterized by a variety of symptoms including skin abnormalities, abnormal nail growth, lesions in the mucous membranes, and, in approximately 90 percent of the cases, progressive bone marrow failure. A variety of other abnormalities can also occur. DC patients come from all over the world and there seems to be no bias as to race or ethnicity. The disorder does, however, appear to be much more prevalent in men than women.
Headquarters: New York City
How did you become involved in rare disease: Like a lot of advocates in this space, it wasn’t a choice initially. My child was diagnosed with a rare disease. When he was diagnosed, we were told we were a little tiny island in an ocean of cancer and sources of support were going to be hard to come by. I got to know DC Outreach through his diagnosis and joined the board. Eventually the leadership role became available and I took over in 2016.
Previous career: Stay at home mom
Education: Completed 1.5 years towards a nursing degree at North Idaho College.
Organization’s mandate: Our main goal is to be first a patient advocate and second an advocate for our physicians. When we go to conferences, it’s our job to educate physicians about this rare disease and advocate for proper treatment and diagnosis.
Organization’s strategy: DCO has been around for about ten years. Over the last couple of years, before I took over, the previous board developed a strategic plan. The new board, under my leadership, has taken that strategic plan and tried to implement it. We’re still a working board, but we needed committees, we need people outside of the disease, people outside of caregiving, outside of being a patient, to really expand that bandwidth to take an ultra-rare organization to the next level. What that means is rather than relying on volunteers, we started to ask, “What do we need to make the organization a success?” We found people like our communications director, who has a degree in communications and our development director, who has 25 years of experience. We are finding people, and then looking at what we already had going. We have a world renown medical advisory board that was collaborative, and we said we need to integrate them more on the advocacy level and not just the medical level.
Funding strategy: We’re still trying to figure out the best strategies. We don’t have drug development and we’re not working in that space yet, but we’re starting to dip our toes into the bio industry. What we’re really trying to do is get the DC community to take ownership of their own stories and to utilize that. Last year we were part of the UPenn Million Dollar Bike Ride and we have a team called Team Josh and the DCO Riders. Last year at this time we raised about $5,000. We needed $20,000 to get Penn to match and give a grant. This year we’re already at our $20,000 mark, and we’re looking at doubling that in the next few weeks. That’s really about community engagement. That’s been our most helpful fundraising tactic so far—getting our community to where they feel supported enough that they want to give back.
What’s changing at your organization in the next year: We are going from a board run organization to a committee run organization. We are trying to take it to the professional level rather than being all volunteer. We’re taking it to the next business level.
Management philosophy: At the end of the day, my experience in life is nurturing. I have four beautiful children and a lovely marriage. Now I’m part of this community in a leadership role and I try to nurture.
Guiding principles for running an effective organization: I’m smart enough to know when I don’t know and making sure that I listen. Everybody has value, regardless of their position in the organization. I want people to know their voice matters.
Best way to keep your organization relevant: Keep us out there. There are only about 300 patients globally that we are supporting That’s not enough to gain any kind of attention. What we need to do and what we’ve been serious about is our partnerships—for example with Global Genes, with NORD, with comorbidities. Understanding the game is we are all in this together. We might be rare, but we’re not unique.
Why people like working for you: I think people like working with me. I don’t take myself too seriously. The disease is hard enough and the battle with the disease is hard enough that we don’t need to exclude the fun from what we’re doing together. I feel the people on our board are very cohesive.
Mentor: Bruce Friedman, who is a bereaved parent, who started the Team Josh with the Million Dollar Bike Ride. He helped design the strategic plan. He has a master’s in organizational dynamics. He is an incredible example of continuing to give when you don’t have a reason to show up. His child passed away and he continues to show up. I find that a beautiful thing. And he’s an incredible coach. He’s been coaching me through this for the last year and a half and he’s who I look to for answers. When I get a little frazzled and I don’t know how the big game works, he’s who I go to.
On the Job
What inspires you: The community every day. Every day there is something. If you send a care package, the mom or dad lets us know their child received the care package and sends a picture. It’s worth getting up every day and putting 100 percent into it. The community inspires us.
What makes you hopeful: The scientist we work with. They have their hearts and minds fully in this disease. The science is there. Everybody has heard of telomeres today. Real-time science isn’t today, but if we’re patient, it’s coming.
Best organization decision: To go to a committee structure and not create burnout in the board. People were doing too much.
Hardest lesson learned: I’m still learning, but just how much emotion goes into rare disease and understanding everyone’s perspective and understanding that not everyone is going to be professional all the time.
Toughest organization decision: We’ve had to make hard decisions internally. You don’t like to be the person to fire volunteers.
Biggest missed opportunity: We’re going into our tenth year. For so long we didn’t have to capacity to do what we needed to do. It just wasn’t far enough along.
Like best about the job: Interaction—whether its with physicians, or patients, or the bereaved, I just love that person-to-person interaction and knowing we’re making a difference.
Like least about the job: Sometimes the internal drama can be something I’m not a big fan of.
Pet peeve: I take seriously that volunteer time is volunteer time. I don’t like if someone says they are going to do some and then they don’t do it. I like follow through.
First choice for a new career: Nurse Practitioner
Most influential book: To Kill a Mockingbird by Harper Lee
Favorite movie: A River Runs through It
Favorite music: I like everything – I love Imagine Dragons lately.
Favorite food: I love Thai food.
Guilty pleasure: Putting earbuds in and turning the volume up on Eminem and going for a run.
Favorite way to spend free time: With my family–I love my family–hiking, or anything outdoors with them.
May 17, 2018