Name: Skye Miu Steppe
Title: Founder and Chairman
Organization: FD Warriors
Disease focus: Fibrous dysplasia (FD) is a rare bone disease that can affect any bone in the body. The severity of the disease covers a wide spectrum. It can affect a single bone and go unnoticed for years, or it can affect virtually every bone, start early in life, and result in significant physical impairment. It is caused by defective gene in the cells that form bone called Gsa. It is encoded in the genome by the gene GNAS. This mutation occurs sometime during development of a baby while it is still in the mother’s uterus. If the mutation occurs early in development, many tissues may be affected. If it occurs late in development, very few tissues may have the mutation. Because the mutation occurs before birth, MAS is considered a genetic disease. But unlike almost all other diseases, it is not hereditary because it cannot exist in sperm or egg cells. When the long bones (the bones of the legs and arms), or flat bones (ribs, spine and pelvis) are affected, the bones weaken, may bow, may be painful, and will frequently fracture. Affected bones in the skull often expand, may cause disfigurement, and may be painful.
Headquarters: Sweetwater, Tennessee
How did you become involved in rare disease: I have fibrous dysplasia in the right side of my face and skull.
Career: I’m an office manager at a scrapyard.
Education: I have an associate’s degree in education from Cleveland State College in Tennessee. I’m working toward towards a bachelors at Cleveland State College.
Organization’s mandate: We want to help patients with FD and McCune-Albright syndrome, a rare form of FD, to pay medical bills. There are not many hospitals that treat these conditions. We try to help them get to appointments and pay their doctor bills. Eventually we’d like to broaden it to include all rare diseases, but right now it’s just fibrous dysplasia and McCune-Albright syndrome.
Organization’s strategy: We work with the Fibrous Dysplasia Foundation. We travel around, attend rare disease events on Capitol Hill, and speak at public events to raise awareness.
Funding strategy: We do T-shirt campaigns, coffee mug campaigns, and we sell merchandise.
Management philosophy: We have an open-minded concept. Anybody can come to me with an idea and move on it. If they have a problem, they can come to speak with me.
Guiding principles for running an effective organization: I think being able to talk about the problem without everyone getting offended is a big part of it. We can talk to each other and have disagreements without having an argument. We can have a discussion.
Best way to keep your organization relevant: We listen to Rare Disease Legislative Advocates’ webinars, and we get newsletters from everyone. We attend online workshops. When it’s possible, we travel to attend in-person workshops. We do a lot to stay on top of what’s happening with rare disease.
Why people like working for you: I am extremely patient. I control my emotions well. People aren’t afraid of me overreacting to situations. I like to hear a problem, think about it, and come back with an answer.
Mentor: My mentor is my journalism teacher from high school–Rachelle Jones Smith. She taught me how to curb my emotions in a creative way and get my thoughts out on paper. She’s still a big part of my life.
On the Job
What inspires you: Seeing that we’ve made a difference and seeing how hopeful patients get when we are able to buy the $600 plane ticket to get them to their appointment—seeing their lives impacted.
What makes you hopeful: When I get emails or phone calls from Global Genes, or the EveryLife Foundation, it makes me hopeful because I realize what I am doing is making a difference.
Best organization decision: The best decision has been to work more closely with the Fibrous Dysplasia Foundation.
Hardest lesson learned: Not everyone has what it takes to do all the volunteer work that comes with raising awareness for rare diseases. You have to rely on someone and they don’t have it in them to keep going and they quit. That’s been a tough lesson.
Toughest organization decision: Trusting people who don’t have the momentum to keep going. Having people take over parts of the job and finding out later that they were not doing what they were supposed to be doing.
Biggest missed opportunity: I missed an opportunity to travel and attend the Young Adult Representative of RDLA (YARR) meeting that was just started in California. That was a big one.
Like best about the job: Seeing the difference I make in people’s lives.
Like least about the job: That it is never ending. It’s a 24-7 job. I’m an admin of support groups, so I always have a lot of messages from that. You never get a break.
Pet peeve: The same as anyone with an invisible illness. When people assume you are young and look normal, that you are not sick, that you are not allowed to be tired. That a big pet peeve.
First choice for a new career: I would love to be editor for The Mighty.com or any rare disease journalism-type site, or a public relations job inside EveryLife Foundation, Global Genes, or the Fibrous Dysplasia Foundation.
Most influential book: The Things They Carried by Tim O’Brien
Favorite movie: Taken– it makes me think of my dad.
Favorite music: Breaking Benjamin or Seether
Favorite food: Any kind of fruit
Guilty pleasure: Being able to take a nap
Favorite way to spend free time: I enjoy taking my son to the park or reading him books.
September 20, 2018