The Woodlands Marathon

Hi my name is James and this is my daughter Evalyn. Evalyn was born with a genetic defect called Beta-Propeller Protein-Associated Neurodegeneration, or BPAN. BPAN is a disorder which causes an over-accumulation of iron in the brain. There are about 500 kids with BPAN in the world so her diagnosis is pretty rare.

BPAN kids can be impacted by the disorder in different ways. Most kids have significant cognitive and physical delays. Some kids have significant physical issues including the inability to walk or talk, as well as suffer from seizures. Many BPAN kids will progressively get worse and some will eventually suffer from early-onset dementia and potentially Parkinson's as well. It truly is a difficult diagnosis. 

Evalyn was diagnosed in 2017 at the age of 5. We spent years dealing with seizures and physical and cognitive delays with no answers from doctors. The diagnosis helped us to see what the problem was, but really didn't help much since there wasn't anything that could be done. She is unable to speak and really doesn't understand much of what goes on around her, but she has an amazing heart. She absolutely loves people and loves to give hugs. Like many other BPAN kids she has started to regress in the last year. Evalyn has lost a significant amount of her ability to communicate and has lost much of her balance and ability to walk. Last year was Evalyn's first half marathon (in her wheelchair) and both of us are very excited to be running again! Last year we finished just over 2 hours and we are looking to do even better this year!

We are raising funds to support NBIA Disorders Association so that we can contribute to research efforts as well as spread awareness of these Brain-Iron disorders like BPAN. BPAN research is not government funded and does not have large research grants to cover expenses. Most of the money raised for research is done by the families and friends of those who have been impacted. 

We really appreciate your consideration to contribute to our cause. With your help, we can continue to fund necessary research to hopefully bring an end to these disorders and help to bring some good news to families who struggle with disorders like BPAN every day.

Thank you and God Bless!