Julie’s Journey of Hope
Local woman seeks to raise funds, awareness for Friedreich’s Ataxia
MARQUETTE — A local woman who has Friedreich’s Ataxia, a progressive neuromuscular disease with no cure or treatment, has been working with family, friends and local businesses to support the Friedreich’s Ataxia Research Alliance, a 501(c)(3) nonprofit dedicated to finding a cure for the rare genetic condition.
Julie Vallier of Gwinn formed Julie’s Journey of Hope to raise funds while spreading awareness of the genetic condition, which begins as difficulty with balance and coordination but progresses to a “life-altering loss of mobility, energy, speech and hearing,” according to the Friedreich’s Ataxia Research Alliance, or FARA.
“There are a lot of very young children who are diagnosed with Friedreich’s Ataxia … So if not for me, for the little child that’s diagnosed. Every penny we raise is going to help,” said Vallier, who is around one of around 5,000 people in the United States diagnosed with the condition.
Vallier has also recruited a team of people to form the Yooper Road Warriors, who will bike with her during FARA’s rideATAXIA fundraising event in Chicago during July. Vallier hopes her team can raise $10,000 to donate to FARA.
To help support the cost of Vallier and her teammates attend the event while raising as much money as possible for FARA, organizers are hosting the Snowshoe Under the Stars fundraiser starting 4 p.m. Saturday at the Up North Lodge in Gwinn.
“It’s going to be a fun family event,” Vallier said, adding that she hopes attendees will “learn what they can about Friedreich’s, and then take what they learn and talk about it.”
The snowshoeing will start at 6 p.m. and snowshoers can take 0.75-mile trail or a 1.5-mile trail — both which will be lit with hand-made icicle candles — with a hot chocolate checkpoint located halfway. Attendees are asked to provide their own headlamps and snowshoes.
Registration for the event begins 4 p.m. Saturday. Attendees can enter bucket raffles at this time, as numerous raffle items have been donated to help raise funds during the event, Vallier said, also noting “any donations that would be contributed to FARA would be most appreciated.” Bucket raffles will be drawn at 8 p.m.
There also will be a Tripelroot tap takeover at the Up North Lodge starting at 4 p.m., with $5 flights, $3.50 pints, and food flight specials.
Vallier is grateful for the many that have helped to raise money and acted as sponsors, such as Gary’s Knotty Pine; Jean Kay’s Pasties & Subs; VanDamme, Inc; Getz’s; AZool Grill; Plourde Forest Products; Anytime Fitness of Gwinn; Midway Rentals and Sales; Larry’s Family Foods; Riverhawk Lodge; Marquette Golf Club; Brigette’s Mutt Cutz; the Kountry Korner and Crossroads Mini-Mart, the Up North Lodge and the Full Throttle Bar & Grill.
“The Up North Lodge and the Full Throttle both have been so supportive helping us out,” Vallier said, “because we did a fundraiser in the fall at the Full Throttle; we did a bean bag toss and we raised a lot of money out there.”
Vallier, who has always enjoyed outdoor activities such as hiking, biking, fishing and skiing, is also grateful she’ll be able to ride in July’s rideAtaxia event with her team members, as she was awarded a recumbent bike by the Ataxian Athlete Initiative, which is supported by FARA and the Burrows Hill Foundation.
Vallier herself was diagnosed with Friedreich’s Ataxia about two years ago, after five long years of working with doctors to determine the cause of her symptoms.
It took multiple misdiagnoses, a referral to the University of Michigan’s hospital and two years of extensive testing there to get closer to an answer, she said. Finally, a neurologist at the university suggested that Vallier might be suffering from a form of ataxia and referred her to the university’s ataxia clinic.
Then, an answer was on the way when Vallier’s insurance approved the genetic testing that would reveal she had Friedreich’s Ataxia
“They finally approved it and I went down for a simple blood test,” Vallier said. “And within three weeks, we knew.”
The news wasn’t good — Friedreich’s Ataxia can lead to loss of coordination in arms and legs; energy deprivation and muscle loss; severe scoliosis; diabetes; impaired vision, hearing and speech; cardiomyopathy and arrhythmia — but it was an answer after years of waiting.
“It’s very unnerving, but I’m very thankful to know; because now I can deal with it,” she said. “But it’s very scary at the same time because there is no treatment, there is no cure and there’s no timeline.”
Because there’s no known timeline for how fast the disease will progress, the uncertainty can be difficult to deal with, she said.
“No one can tell you how bad it’s going to get,” Vallier said, “and how soon that’s going to happen.”
Despite the uncertainty ahead, Vallier is remaining positive and focusing on what she can do, as her condition had a later onset than many cases of Friedreich’s Ataxia — Vallier’s wasn’t diagnosed until she was in her late 40s, while many people begin to show signs and symptoms of the progressive disorder in their childhood and teenage years.
“I’ve been blessed by being able to walk, to hike, to see many parts of the world; and to not be diagnosed until I was 48,” she said.
For others with Friedreich’s Ataxia and similar conditions, Vallier encourages them to keep fighting.
“The more you fight it, the better your chances are,” she said.
For more information on Friedreich’s Ataxia and FARA, visit curefa.org. For more information about Saturday’s event, visit http://www.theupnorthlodge.com or call 906-346-9815.