Running Back with Aplastic Anemia and PNH Nominated for Rare Disease Champion Award

[Marrowforums]

Aplastic anemia and PNH patient Jordan Culbreath has been nominated for the 2011 Rare Disease Champion Award by Uplifting Athletes, an organization created by college football players to help the more than 30 million Americans affected by rare diseases.

The winner will be determined by votes cast during February 2011. On the nominee page you can read the inspiring stories of Culbreath and the other nominees, then vote for your favorite at the bottom of the page.

The Uplifting Athletes Rare Disease Champion Award is presented annually to recognize a leader in the world of college football who has realized their potential to make a positive and lasting impact on the rare disease community.

Princeton running back Jordan Culbreath
photo from Uplifting Athletes

Jordan Culbreath's Medical Journey

Culbreath, a football team walk-on as a Princeton freshman, became a starting running back, earning unanimous first-team All-Ivy League honors in 2008 after leading the conference in rushing.

In 2009 he started experiencing unexplained symptoms of headaches, numbness, and exhaustion. Blood tests after he was sidelined by a sprained ankle showed that he had aplastic anemia. He was also diagnosed with PNH.

Given his low blood counts, a blow to the head on the field could have been fatal so the sprained ankle may have saved his life. His sister Carissa was not a match for a bone marrow transplant. There was no match in the bone marrow registries. The odds of an unrelated match were against him because his father is African-American and his mother has Japanese, German, and Irish heritage.

Instead, Culbreath received dozens of transfusions and underwent immunosuppressive treatment with ATG at the National Institutes of Health in October 2009. He received Soliris, a drug for PNH, starting in February 2010.

Even during treatment he was determined to play football again. Six months after his treatment he was given the green light to begin working out again. He surprised his teammates by showing up for training camp for the 2010 season. He was named a co-captain and in September 2010 Culbreath scored a game-winning touchdown in double overtime against Lafayette, finishing as Princeton's 8th all-time leader in rushing.

Culbreath reached out to and inspired other players, families, and strangers on his CaringBridge page. He's one of five candidates for the Rare Disease Champion Award, now in its third year.

Go to the nominee page if you want to vote for Jordan Culbreath during February 2011.
The winner will be announced at the end of the month.

[Ryan Jay]

This is such a great story. Go to his caringbridge site; it's very inspirational.

[Marrowforums]

Aplastic anemia survivor Jordan Culbreath has received the 2011 Uplifting Athletes Rare Disease Champion Award. The announcement was made today at the National Institutes of Health's annual Rare Disease Day.

For details see Jordan Culbreath Named 2011 Uplifting Athletes Rare Disease Champion.

Scott Shirley, founder and Executive Director of Uplifting Athletes, said

Not all of our Rare Disease Champion finalists are themselves rare disease survivors, which is what makes Jordan's story so compelling. He embodies everything Uplifting Athletes stands for. He's a gifted athlete who channeled his strength and determination to overcome a personal obstacle, but he also inspired countless people along the way.

Congratulations, Jordan! We thank you for your efforts to bring awareness to bone marrow failure diseases.

[Marrowforums]

Jordan Culbreath was recognized by the College Football Hall of Fame on May 11, 2011 at the 15th annual KeyBank Gridiron Legends Luncheon Series in South Bend, Indiana. Redskins Quarterback Donovan McNabb headlined the luncheon where Culbreath was honored.

Jordan, quoted in a news release, said "I’m very lucky. I know that. I don’t take anything for granted."

Jordan has reached out to other players, families, and complete strangers who were inspired by his story, using his CaringBridge.org blog.