About Us

our story

My name is Stephanie Papke. I was diagnosed with a rare bone disease called melorheostosis in 2002. I suffer from severe, chronic pain on a daily basis and have lost over 50% of the strength and function in my left arm.

Melo affects children most frequently – the majority are diagnosed under the age of 20. I was fortunate enough to have a successful volleyball career at Washington State University from 1993–1997 before feeling the painful effects and limitations of this debilitating disease.

Many children, however, will never have the opportunity to share my experience of being a high school and collegiate athlete. These children are the driving force behind my passion to find a cure for melorheostosis.

As an adult I can stand the pain. I cannot, however, stand by and watch these young people’s quality of life deteriorate. I will not allow them to live without hope.

The only way this goal can be achieved is with YOUR help. Finding treatment, a cure, and a cause starts with funding for research.

Please join me in this cause. Together we can give hope to all people affected by melorheostosis. Thank you!