The Yellow Bird Project
Posted on September 5, 2011 by Sarah A. Grothjan

When someone asks me who I am or what I do, I typically default to any combination of journalist, student, writer, intern. I think these descriptions embody just about every person I currently attend college with at the E.W. Scripps School of Journalism. It’s just the largest chunk of who we are at this point: students defined by our majors, friends, family and interests.

However, there is one other title I have earned yet very rarely attach to my name: rare disease patient.

When I was eight, I was diagnosed with a rare disease known as Fibrous Dysplasia.

Without divulging the nitty gritty, FD is characterized by abnormal bone growth – a tumor. At the time of my diagnosis, my doctor informed me that only one person in the US is diagnosed with FD every year. There is no cure and no understanding of what causes the rare disease. It’s not genetic nor does it stem from any virus strain. One person is diagnosed every year in the US, and in 1998, that person was me.

In fact, it isn’t uncommon for many new doctors I come in contact with to have never heard of FD. I think of myself as a fairly average girl, but I guess I somehow defied the odds with that diagnosis.

So how does this relate to a fashion blog, you ask?

Just recently, a man named Howard Liebers contacted me after reading my Tweet about being a proud rare disease patient. I’m a Rare Disease Day Ambassador and attempt to spread the word through a few tweets and Facebook posts here and there.

Liebers is affiliated with a wonderful company called the Yellow Bird Project, which teams up with bands to design t-shirts and donate the proceeds to charity. Recently, Liebers partnered with the band Freelance Whales to create fabulous t-shirts. The proceeds from selling these shirts will be donated to a non-profit foundation founded by Liebers called MarbleRoad.

T-shirt designed by drummer/percussionist Jacob Hyman and his girlfriend Meredith Slater

These t-shirts are not only a way to give back to the small percentage of the world affected by a rare disease but to also spread the word that people do suffer from a wide range of lesser known afflictions. While I may already be included in the small percentage of people with FD, I’m in an even smaller percentage of people who  deal with little to no daily complications from the disease. Many other people, including those with FD, encounter daily obstacles regarding both injustice from loopholes in the health care system as well as the respective complications caused by their disease.

Another reason to purchase this t-shirt? They are absolutely fabulous. The tees are great quality, have artistic flair and embody a powerful message.

I know I’ll be dawning mine this fall with a leather jacket and booties. How will you wear yours?

You can purchase a t-shirt online here.

MarbleRoad is a non-profit, 501(c)(3) public charity whose mission is to connect people who have complex illnesses with the resources they need to help them improve their lives. MarbleRoad provides financial assistance and support for people who have been impacted by a rare disease diagnosis and/or who are patients of community health centers in need of specialty care services. To raise funds, one of MarbleRoad’s primary activities is the IndieMatch campaign, which partners with independent artists and musicians in philanthropic opportunities, including as many as three art exhibitions/sales per year by artists and of work that have been influenced by a health care experience.