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.

Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund

DANA POINT, CA – September 1, 2010 – All Kids Deserve To Have Hope For A Cure – The ‘Vote4Hope’ Pepsi Refresh Rare Disease Campaign starts today. The Children’s Rare Disease Network (www.crdnetwork.org) and The Global Genes Project (www.globalgenesproject.org) are inviting the public, as well as caregivers, family and friends of the millions of children who suffer from rare diseases and disorders, to ‘Vote4Hope’ throughout September during The Pepsi Refresh Project.

The ‘Vote4Hope’ Rare Disease campaign is designed to help drive awareness for the unmet medical needs of the global rare disease community, and to support the development of the Global Genes Project. The Pepsi Refresh ‘Vote4Hope’ campaign opens today at http://www.refresheverything.com/fundhopeforsickkids and will continue through September 30.

“We entered The Pepsi Refresh grant competition with the goal of continuing education surrounding rare diseases and to generate the global awareness the rare disease community deserves,” said Nicole Boice, founder and president, Children’s Rare Disease Network and the Global Genes Project. “Many rare diseases affect small numbers of patients and because of the rarity of each condition, the public is often unaware of these chronic and life threatening conditions. However, collectively millions of people worldwide have rare diseases and everyone knows an adult or child suffering from a rare condition.”

If the Global Genes Project wins The Pepsi Refresh grant competition, funding will go to support further development of the Global Genes Fund. The Global Genes Fund is an innovative platform, which promotes as number of rare disease initiatives including ‘in-a child’s-lifetime’ research and therapy development. The development of the Global Genes Fund will provide tremendous value to the millions of children, families and rare disease organizations that support them.

Time To Refresh Rare Disease Facts

A staggering 250 million people worldwide are estimated to suffer from approximately 7,000 different forms of rare diseases with the vast majority having no therapies at all. In the United States, FDA statistics show that approximately 350 new drugs have been developed for the entire rare disease patient population since the passing of the Orphan Drug Act in 1983 despite incentives put in place by the federal government.

According to the National Institutes of Health (NIH), 30 million Americans are afflicted with a rare disease, or 1 in 10 people. The National Organization for Rare Disorders (NORD) estimates that of the 30 million people in the United States suffering from rare diseases, 50 percent or approximately 15 million, are children. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.

Rare Kids Become ‘Ambassadors of Hope’

Throughout the month of September and during the “Vote4Hope” Pepsi Refresh Rare Disease Campaign, pictures, stories and videos of children living with rare diseases will be featured on a daily basis on the Vote4Hope website: http://www.vote4hope.org/.

Called the ‘Ambassadors of Hope’, these children are representing the 7000 different rare conditions and suffer from diseases including: Ataxia-Telangiectasia, Autosomal Recessive Polycystic Kidney disease, Batten disease, Branchiootorenal Syndrome, Canavan disease, Cystic Fibrosis, Dravet Syndrome, Duchenne Muscular Dystrophy, Fibrous Dysplasia, Joubert Syndrome, Mitochondrial Encephalomyopathy, Niemann Pick Type C, Hutchinson–Gilford Progeria, Spinal Muscular Atrophy, Subcortical Band Heterotopia, Tay-Sachs and Type 2 Gaucher’s disease. To submit a child with a rare disease to the Ambassadors of Hope program, please visit the Vote4Hope website at http://www.vote4hope.org/.

“The ongoing lack of treatments for thousands of rare diseases has created an immense burden on the U.S. healthcare system and leaves millions of children and their families in despair,” added Boice. “At the Global Genes Project, our focus is on creating a unified voice and a platform for hope for this community, with continued efforts on educating the public and our government leaders on the importance of creating a national strategic plan for rare disease.”

About The Global Genes Project

The Global Genes Project is a campaign of the Children’s Rare Disease Network and is a grassroots effort with the goal to increase awareness about the prevalence and lack of treatments for rare diseases worldwide. The Children’s Rare Disease Network is a registered 501c3 non-profit organization. For more information, visit http://RAREproject.org/ or http://www.globalgenesproject.org.

About The Pepsi Refresh Project

The Pepsi Refresh Project is giving America the power to decide how to fund good ideas, big and small, that help refresh our world. In an effort to support those who generate innovative, optimistic ideas, the Pepsi Refresh Project http://www.refresheverything.com, will award more than $20 million in 2010 to move communities forward. Each month, The Pepsi Refresh Project accepts 1,000 ideas and asks America to choose which ideas will win a Pepsi Refresh Grant.

For more information contact:
Jacqueline Tanzella
Spark Public Relations
jacqueline@sparkpr.com
415-321-1889

Nicole Boice
Global Genes Project
nicoleb@rareproject.org
949.248.RARE (7273)

2:32 a.m. That’s the time of night (or super early morning) that Billy wakes up. I hope it’s a bad dream from too much Scooby-Doo. I listen to the monitor for a minute or two to see if he’ll fall back to sleep. I count on my fingers – January, February, March. Not long enough. I was really hoping we’d get to June before he needs more pain medicine for his bones (by IV infusion, about 5 hours).

I plod down the stairs to his room and offer him some water. He quiets. I trip back up the stairs and try to sleep, heart pounding from steps in the dark and worry. He cries out again (repeat above).

He cries out again. This time I just stay in his room pushing the dog into a tighter curl-up at the end of the bed as I perch on the edge of the twin mattress. I can’t really sleep at this point. And think how much I hate bone disease. I hate the surgery scars (make me wince, on the inside, every time I see them). But what I hate the most is the pain.

I won’t know for sure for a few more nights. Fingers crossed it’s just a bad dream.

I wrote this in May but was too superstitious to post it. It was pain, and Billy did more infusions. I was talking with one of my favorite researchers today about the pain. Apparently, Billy has it worse than most. Maybe he feels okay about 80 percent of the time and then miserable with pain 20 percent of the time? That 20 percent haunts me.

One of the reasons we (me) went for getting  a companion dog for Billy was because I read that pets can help with pain, pets make people feel better. Everyone, pretty much, thought I was out of my mind to add another responsibility to my day to day life. Now everyone loves Picasso and has no doubt he is great for Billy, especially when Billy sings songs to Picasso like “you are my buddy, you are my pal” as he gives him sweet pets.