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Photographs by Paul Nordmann

Meet the four winners who’ve demonstrated dedication to the advancement against a rare or chronic disease either through research, patient advocacy, raising awareness, or community building.

When he was 4 years old, Matthew Pearl received a diagnosis of Fanconi anemia, a blood disorder that leads to bone marrow failure. At 9 1/2 years old, he underwent a bone marrow transplant. The following year, he was invited to speak at a scientific symposium held by the Fanconi Anemia Research Fund.

“I’ve been going back ever since,” the now 21-year-old from Eureka, Missouri, tells Healthline.

That first speech 17 years ago sparked a drive in Pearl.

In the years following, he went on to speak at various charity functions and scientific symposiums for the National Marrow Donor Foundation and Fanconi Anemia Research Fund in the United States, Canada, and Brazil. There are plans for Pearl to speak in Germany in 2019 to both patients and researchers.

While Pearl discusses his personal experience with the disease during these talks, he also aims to increase awareness about Fanconi anemia and raise funds for research.

We asked Pearl about his studies, goals, and obstacles. Here’s what he had to say.

This interview has been edited for brevity, length, and clarity.

What prompted you to get into your field of study?

I graduated high school early, and before I went to college, I did an internship with Harvard at the Dana-Farber Cancer Institute. For about two months, I studied Fanconi in a lab doing research, and every other day I was with a new geneticist or laboratory person looking under the microscope and learning about the different sections of Fanconi.

While doing that, I decided looking into a microscope every day for eight hours wasn’t for me. I learned that awareness and advocacy is where my passion is. So, I went to college thinking I wanted to do nonprofit studies and leadership so I could help others.

I didn’t find a major that fit what I was looking for, but the dean of faculty helped create one for me. I’m now majoring in leadership consulting with an emphasis in nonprofit management and a minor in psychology. I’ll graduate in December.

What are your goals for the future as they pertain to Fanconi anemia?

Aside from wanting to live as long as possible and as productive of a life as possible with Fanconi, I want to work for any nonprofit out of a large for-profit company. For example, working in a nonprofit division of Coca-Cola or Enterprise Rent-A-Car would be great.

That said, I’d eventually like to work in consulting, where I’d go from nonprofit to nonprofit and help them survive longer. I’d look at what the organization can change in their culture, climate, structure, and [overall] dynamics.

The nonprofits that will hit closest to me will be those that help children. I’m very passionate about helping children, because so many people have helped me.

So many helped my sister, too. She also has the disease and had a transplant when she was 5 years old. She’s 23 now. Since she’s more private about having the disease, she doesn’t like to talk about it. I talk for us both.

What obstacles do you envision encountering, or have encountered, as you move toward your goal of spreading awareness for Fanconi anemia?

The average life expectancy of people with Fanconi is only 33 years old, but as I’ve gotten older, life expectancy has gone up. When I was 11, the average age was 22. I want to make it past 33.

I take as many preventive measures as I can, like reducing the amount of alcohol I consume, avoiding smoking, and wearing sunscreen. People with Fanconi have a higher chance of developing cancers, and if you add in smoking, drinking, and not using sunscreen, you can increase your risks.

Personally and professionally, I feel like I have a lot to do in a short amount of time. I have a lot of goals, and I’m not sure how to get there.

Also, it can be difficult to get a job. I’m only 5 feet 2, I have one kidney, and both of my thumbs are different than most people’s, but that doesn’t keep me down.

There are things that people don’t know about me: I can rock climb faster than the average person. I’m a certified snowboard instructor. I ride motorcycles. And while I’ve never been able to play contact sports, I do noncontact karate and achieved my second-degree black belt when I was a sophomore in high school. I even taught karate for two years.

Just because I have a number of different disabilities doesn’t mean I can’t take a disability and turn it into an ability.

What message would you like to give those within the Fanconi anemia community?

My message is always to never give up and keep fighting. I developed something called “FA Life Lessons.” I talk about these when I give speeches, and they are:

  1. Always love and appreciate your family.
  2. Always be a doer and a dreamer.
  3. Be selfless and find the positive.
  4. FA means “Fight Always” and “Find Answers.”
  5. Stand tall and be a strong leader.
  6. Research is the key.
  7. Life is helping others, not a job or a paycheck.
  8. Fight back by giving.
  9. Put purpose to the pain.
  10. FA is my black paper.

Lesson 10 needs some explanation. I was coming in as a freshman at Westminster, and I was asked to speak on behalf of all in-coming freshman that year.

I had two weeks to put a piece together, and I was on vacation with my family. I ended up writing the speech the night before, but it was one of the best speeches I’ve ever delivered.

I wore all white during my speech and I said, “Be the white crayon. Think about it. It’s the one that never gets used, is the sharpest in the box. The one that never gets picked, never touched. But one day, the white crayon will stand out because you’ll learn all you ever needed was black paper.”

For the past three years, I’ve been saying that in a lot of my speeches.

Cathy Cassata is a freelance writer who specializes in stories around health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.