It’s rare to see a young person take such strong leadership and initiative and work for good in the midst of an extremely challenging situation.

Red Deer’s Courtney Willoughby, 17, was diagnosed with neurofibromatosis (NF) when she was a child. There is no cure for NF and although it is one of the most common genetic disorders in the world, not many have heard of it.

While most 17-year-olds are pretty carefree and enjoying their last year of high school at every level, Willoughby has got much more on her mind these days. She’s helping to organize a fundraiser for March 18 at The Keg to raise funds for research into NF.

She decided awhile back to step up and work hard to raise awareness about NF – a condition she calls “the forgotten disease.” Neurofibromatosis encompasses a set of genetic disorders that cause tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. There are three types — NF1, NF2 and Schwannomatosis. 
Neurofibromatosis 1, which she has, occurs in one in every 3,000 births.

Besides having several small tumors, Willoughby, who is in Grade 12 at Hunting Hills High School, also suffers from a non-stop headache that doctors say is a result of the NF. She also deals with hormone imbalances and scoliosis (curvature of the spine).

As she prepares for the fundraiser, it’s amazing to see the determination and courage exuding from this young woman. She talks openly about having NF, and about how it has impacted her life. There is a calmness there. She simply wants people to know more about the condition and remember that it deserves generous research funding as well.

She admits some days are tough, but makes it a point to keep in mind that things could be much worse, she explains. NF can cause enormous tumors all over the body in its most severe and aggressive forms.

Willoughby met a man from Texas who has such a case, and draws plenty of strength from watching him deal with the daily challenges of coping with his condition.

Her compassion is influencing her choice of career as well — she wants to study medicine and work as a nurse practitioner one day.

As for the fundraiser, Willoughby is excited to see the plans take shape. There will be refreshments and she will also be giving a presentation on NF and her own battle with it. She hopes that the more people know about it, the more they will open up their hearts to give.