Community Corner
Charity Walk At Point Defiance For Child Tumor Research
The Shine a Light NF Walk will raise awareness about the rare condition neurofibromatosis.
CTF: On September 15, 2019, 50 people, collectively known as Team Fighting Vikings: Oskar’s Warriors, will gather at Point Defiance Park for the Shine a Light NF Walk, the signature fundraising event of the Children’s Tumor Foundation (CTF). The team joins hundreds of families from the greater Seattle area to bring neurofibromatosis (NF) out of the shadows and raise critical funds for research.
The Children’s Tumor Foundation, a leader in the fight against this genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in every 3,000 people of all populations, identifies NF Heroes as those who have demonstrated remarkable courage and a positive spirit living with NF. Oskar’s friends and family make up Team Fighting Vikings: Oskar’s Warriors, who walk and fundraise in his honor.
Elisabeth Nilsson learned her son had NF1 following his 2-week checkup with their pediatrician. It took several additional follow-up appointments and a genetic test to confirm the diagnosis.“Our first instinct was pure terror, followed by overwhelming fear, eventually overcome by determination. We feel fortunate that at this point Oskar has limited symptoms of NF, including about 60 cafe-au-lait spots, bone deformities in one leg, and speech delay,” said Elisabeth Nilsson. “We are blessed to have a joyful, happy little boy that brings a smile to everyone he comes in contact with. He is constantly waving, smiling and giving high fives to everyone.“
Currently there is no cure for NF, but clinicians and scientists are optimistic that with funding for more research, actionable treatment options to improve the lives of the 2.5 million people living with NF will be attainable. Events like the Shine a Light NF Walk are instrumental in advancing research that, for example, has led to being on the cusp of the first FDA-approved drug for neurofibromatosis. “It is our goal to raise awareness about NF and raise funds for the Children's Tumor Foundation to help continue research and clinical trials in order to end NF,” Elisabeth added.
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WHAT:
Shine a Light NF Walk, a national fundraising program of the Children's Tumor Foundation that raises awareness and supports NF research.
WHO:
Open to the public - everyone is welcome (registration required): individuals, friends, families, teams, and corporate groups. On-leash dogs are welcome, too!
WHERE:
Point Defiance Park, Owen Beach
5605 Owen Beach Road
Tacoma, WA 98407
WHEN:
Sunday, September 15, 2019
Check-In Begins 9:30 am
Walk Begins 10:30 am
For additional information and registration, visit www.shinealightwalk.org/seattle.