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Endeavor for Histiocytosis

A personal campaign sponsored by Jenna Holden

September 10, 2018

Support Me

Hello friends,

I am raising funds for the Histiocytosis Association by participating in the endeavor team challenge.  This is a 30+ hour, 40+mile, multi-discipline adventure race in Bear Valley, CA. What better way to celebrate my first full year in remission from Langerhans Cell Histiocytosis (LCH) than to train for an adventure challenge, raise funds and fight for those battling the disease! I am thankful to be healthy enough to train, and realize this is sadly not the case for others affected by this disease.

About LCH: This is a rare disorder that occurs when the body accumulates too many Langerhans cells, a subset of the larger family of cells known as histiocytes, which are a type of white blood cell that helps fight infection. While Langerhans cells are found in normal, healthy people, In LCH there is an over-production and build-up of these cells which can form tumors and cause organ damage.

I was diagnosed with Langerhans Cell Histiocytosis in 2012 after undergoing neurosurgery to remove a tumor in my skull caused by the disease. I have had 3 recurrences since, including another skull lesion, a tumor on the pituitary stalk resulting in diabetes insipidus and a bone lesion on my scapula. In addition to the neurosurgery, treatments have included 10 months of chemotherapy infusions and 8 Cyberknife radiation treatments. I have been blessed with good health this past year. I had a follow up MRI and CT-PET scans in May which showed great results, no new malignancy and the tumors that are there are stable- no regrowth!

Through my journey with LCH I have learned that each struggle and recurrence is an opportunity to become further refined and practice resilience. It is through challenge that I have built capacity and gained perspective. This in turn has changed the way I see myself as well as my circumstances. This is something that can not be bought, only gained through experience. This is partly why the Endeavor Challenge was so appealing. I hope to come away from this experience seeing myself and the world around me from a new and greater perspective.

Histiocytic disorders are considered “orphan diseases”.  An orphan disease is one that affects fewer than 1 in 200,000 individuals in the United States. Subsequently, these disorders do not receive a high priority for government-funded research. The Association relies on contributions from corporations, foundations, and individual donors to fund critical research, build awareness and conduct community outreach initiatives. 

Join me in celebrating my health by donating to the Histiocytosis Association in support of my participation in the Endeavor Team Challenge. 100% of all proceeds raised will do directly to the Histiocytosis Association a 501 (c) (3) organization.