Thank you for your interest in my Quest4NF2!
I am a person living with brain and spinal tumors as the result of the genetic condition Neurofibromatosis Type II. My quest is using the ability I still have to raise awareness and funds for research to improve the lives of everyone with NF.
I kicked off the quest by running two 5K races in June and Harley and I completed our 31.5 mile hike on the Snoqualmie Valley Trail (SVT) in Washington on September 7th, 2008.
Not only do I train to do these athletic feats but I keep fit and strong to have the best quality of life and to prepare for future surgeries. This pattern of surgeries and uncertainty will become a routine part of life for me untiI a way to stop the tumors is found. It IS a routine for several other patients with NF. For those of us with NF2, each surgery brings us tremendous anxiety for what the future holds as the risks of serious damage are high. Ever see the movie "The Diving Bell and the Butterfly" where the main character wakes up unable to move, speak, eat, and communicate? Just imagine being aware of what is going on around you but locked inside your body unable to respond. No matter how well we are doing beforehand, that situation is a real possibility we face our entire lives each time we need a surgery.
My surgery/treatment number is pretty low and I am just getting started. I began in 2004 with radiosurgery which was not effective in stopping the tumor before it continued to grow. Significant side effects and permanent damage to my vision and balance occured. Becoming completely deaf was the easy part, believe me!
NF can be frustrating as well as emotionally and physically painful. NF2 causes deafness, blindness, visual impairment, loss of balance function, muscle weakness, paralysis, stroke, eating and swallowing difficulties, loss of tear and saliva production, disfigurement, mental cognition challenges, and even death in extreme cases.
Since no cure exits at this time, we will continue to endure this cycle of losses to our quality of life until a solution to defeating these tumors is found. Although medical science is getting close, continued funding is necessary to support this research.
With your help we can achieve that goal in two ways:
1) Please make a charitable contribution on my page. (It is TAX DEDUCTABLE!)
2) Please help me serve this mission by telling everyone you know about NF2 and helping to collect donations for my research fund.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support!
With sincere appreciation,
Rebecca Dufek :o)
Special thank you to our offline sponsors:
Intuitive Solutions Group, LLC $500
Real Estate Investment Firm $200
Bubbles Below Scuba $150
Dr. Iris Gibbs, Stanford University $100
Cheryl Young $100
John, Theresa, and Mary Piron $80
Pat and Jeanette De Grand $50
Diane and Irene Clavin $50
Joan Krawcheck $50
Redmond Park Square Dental $50
Dianne Stegbauer $31.50
Tony Wright $30
Stephen and Marta Wallin $25
Olga De Grand $25
Don and Gale Thomas $25
Sally Still $25
Shirley Enderby $20
Michael and Debbie Fitz $20
Redmond Eye Clinic $10
P.S. – Keep visiting my blog the NF2 Odyssey for updates.
Recent news articles about our hike: