Mukilteo woman organizing 2nd annual Walk 4 CMT
Last updated 6/26/2019 at Noon
At the time that Mukilteo resident Emily Osborne was diagnosed with Charcot-Marie-Tooth (CMT) there was virtually nothing known about it.
Osborne was diagnosed with CMT at 10-years-old.
“I just thought it was a weird thing I had to live with,” Osborne said. “I didn’t have anyone else to talk to about it. It was so rare, so my family never talked about it.”
CMT is a neurological disease, that affects one in every 2,500 people in the United States, according to the National Institute of Neurological Disorders and Stroke.
CMT affects motor and sensory nerves, eventually killing the nerves in the lower legs, feet and hands. It is found in both genders, all races and ethnic groups and currently has no cure.
Although a daunting disease, Osborne continued to stay strong, despite not knowing much about the disease and how it will affect her body.
It wasn’t until 30 years later she found that the disease she thought was so rare wasn’t after all.
After searching online, she found a group called CMTA (Charcot-Marie-Tooth Association).
CMTA is a group that supports the development of new drugs to treat CMT. The group strives to find ways to improve the quality of life for those suffering with CMT through informational group meetings and conferences.
The day Osborne found out about CMTA, she also noticed that CMTA held fundraiser walks called Walk 4 CMT. The walk is a volunteer-led national fundraising campaign.
Osborne always tried to stay active, and a few years ago she even started to attend 5K races.
Although she didn’t run them, she enjoyed being able to walk the races.
With plans to attend the next Walk 4 CMT, she was soon faced with disappointment. Washington did not host any CMT walks.
She began searching through the website and learned that she could host her own walk through CMTA.
Soon after her discovery, she went to her first meeting and presented her idea of hosting a walk in Mukilteo.
“I showed up like a whirlwind,” Osborne said. “I was so excited, I couldn’t believe it. It changed my life.”
Because of how active she was in her CMTA meetings, Osborne soon became the co-leader for the CMTA Seattle Branch.
Osborne is preparing to host the second annual Seattle Walk 4 CMT event in Mukilteo.
“It was exciting for me going 30 years from nothing to spreading awareness about this disease,” Osborne said.
The walk will be at Harbour Pointe Middle School on Saturday, July 13. The event will be open at 11 a.m., and the walk will begin at noon. The walk will last for 30 minutes and will be held at the school’s track.
The event will feature live music and a variety of activities. Attendees can participate in a cornhole game or play with a six-foot tall home-made plinko machine.
The Puzzle Project and CMT Traveling Quilt will also be present during the event.
The Puzzle Project is part of the fundraiser, where those who donated can sign the back of a puzzle piece. At the end of the walk, the puzzle pieces will be put together to show, not only the image, but the people who were able to donate for the fundraiser.
Osborne describes the puzzle as a metaphor for the event, where many people can come together to learn more about CMT and the people who have it.
“One puzzle piece may not seem to make a difference, but when you put it all together it makes an image,” she said.
The CMT Traveling Quilt has a similar concept. The quilt travels around to different locations targeting areas where CMT may be most present. The people who have the chance to meet the Traveling Quilt will be given the opportunity to sign the quilt.
There will also be information tables where attendees can get pamphlets, handouts, and magazines about CMT to learn more about the disease.
A silent auction will be held after the walk.
Some of the items included in the silent auction will be tickets to Mariners games and Mariners merchandise.
After the silent auction, the puzzle from the Puzzle Project will be revealed. A group photo with the puzzle will also be taken at the end of the event.
Osborne hopes that the event can bring more awareness about CMT.
“I want people to feel that they’re not alone,” she said. “I grew up feeling that I was the only one who has this disease, and I don’t want people who have CMT to feel that.”
Holding the walk at Mukilteo is also very important to Osborne, being a part of the community for more than 18 years.
“I want to see a lot of people from Mukilteo come,” Osborne said.
“I would like to see the support from the people in Mukilteo. Even if they’ve never heard of CMT or heard of me, I’d like them to come out. It will just be like another Mukilteo resident supporting another Mukilteo resident.”
Those interested in the walk can register online through Cmta.akaraisin.com/walk4cmt19/seattle. Those who registered will receive their own fundraising page to share on social media, so others can have the chance to donate.
Participants don’t have to register to attend the event. Registration and attending the event is free. All proceeds will go towards supporting CMTA along with finding ways to cure CMT.