A local young woman with a little known condition is grateful for the solid show of support from the community during a recent fundraiser.
Courtney Willoughby, 17, was diagnosed with neurofibromatosis (NF) when she was three, and has chosen to help raise both awareness and funding for research.
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.
Earlier this month, The Keg offered to host a fundraising event/silent auction on March 18 for research funding. Willoughby is thrilled with the $14,500 that was raised which will go to the Friedman Lab at the University of B.C. for research into NF.
“It was really, really good – people were very generous, and we were really excited to have people out to support the cause,” said Willoughby in reflecting on the event. “The response was great, and people said it was really well-organized.”
Another event, held March 7 at Eastside Mario’s, saw $1,500 raised. That evening featured a raffle and entertainment provided by local singer Steve Arsenault.
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. Unfortunately, little money is provided for research into finding a cure. Willoughby has referred to it as the forgotten disease.
For Willoughby, who is in Grade 12 at Hunting Hills High School, NF brings constant health challenges. When she was 13, she had a large growth removed off of her back which consisted of little tumors that had grown on her skin. She then had a baseline MRI and doctors found a growth in her brain as well.
Thankfully, it hasn’t grown so it doesn’t present any problems. If it was growing, she would likely undergo chemotherapy and radiation but surgery would be an impossibility because of its location. It does, however, mean that Willoughby has to deal with hormone imbalances. She also has scoliosis (curvature of the spine). She also suffers from a headache that never lets up. Doctors have no idea why this is happening, and simply have to chalk it up to NF.
More than two million people worldwide are affected, and that makes NF more prevalent than cystic fibrosis, Tay Sachs disease, muscular dystrophy and Huntington’s disease combined.
Meanwhile, Willoughby is hoping that a fundraiser can become an annual event.
“I was really happy with what was raised – I counted it twice on Sunday just to make sure.”
Donations are still coming in, and anyone interested can still contribute. “We’re looking for all the help we can get.”
For more about how to help out, email firstname.lastname@example.org, call 403-346-6360 or check out the facebook page called ‘Neurofibromatosis Fundraiser.’