Meet Our Volunteers


Ryan and Tracy Brown: Fundraising Hosts

Ryan and Tracy Brown

When our son Ian was diagnosed with Langerhans cell histiocytosis (LCH) in 2006, we were fortunate to quickly find the Histiocytosis Association. Their online services and staff put us in contact with other families and with doctors familiar with the disease, which was invaluable as we navigated through 4.5 years of treatment and 3 recurrences of the disease. In 2007 we began volunteering for the Association as a way to feel empowered and to give back, and share with others the knowledge we’ve gained along the way. Since 2010 we have hosted Histio Hike – Shenandoah. While planning and hosting such a large event is a lot of work, it is one of the most rewarding things I have done in my life. To have families who may have otherwise never met another histio patient tell us how much the weekend means to them is incredibly satisfying.

 

 Jim and Leisa Greathouse: Advocacy

Leisa and Jim GreathouseJim and Leisa Greathouse welcomed a baby boy on August 7, 2005. Samuel Brown Greathouse was diagnosed 10 months later with Langerhans Cell Histiocytosis (LCH). After 16 months of treatment and two preparations toward a bone marrow transplant, Samuel’s body succumbed to the disease on September 17, 2007.

What do grieving parents do in a situation like this, other than ask why? We decided to get involve with the Histiocytosis Association for a number of reasons: 1.) To help pave a smoother path for those that follow, or better yet, so that other children or families never have such a horrid event take place in their life; 2.) To gain a sense of control in an out-of-control situation; 3.) To fulfill a need “to do something”; 4.) To continue to learn and better understand the disease that took our son’s life; and 5.) It‘s a way of coping so that some healing begins to take place. 

We are very proud to volunteer for the Histiocytosis Association. They are the most credible and trustworthy organization funding research on an international level for the common good. Their principles and goals align with our motivations to work toward a cure and the prevention of histiocytic disorders.

 

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