Jennifer Rhode of Ottawa was diagnosed with ALS last year, and soon afterwards found out about the Les Turner ALS Foundation’s Walk For Life.
Still reeling from the diagnosis, the 34-year-old Rhode and her family put together a team on short notice for the charity event — but the results came up anything but short.
“We raised over $20,000 and we had over 100 people come. The support from the community was incredible,” said Pam Margis, Jennifer’s mother.
“And we only had two months,” Rhode added. “It was really that everybody just did it.”
Rhode and her supporters have had a little more time to plan for this year’s walk, which takes place Saturday at Soldier Field in Chicago. And team “The Rhode to a Cure” will again be around 100 members strong as they lead the walk this year as Team Chairs of the event.
“All the support from the community has been overwhelming, in a good way,” Rhode said.
According to the Les Turner ALS Foundation ALS (Amyotrophic Lateral Sclerosis) “is a rapidly progressive, neuromuscular disease that causes muscle weakness in the arms and legs and causes difficulty speaking and swallowing.”
There is no cure for ALS, and average life expectancy after diagnosis is 3-5 years, but according to the foundation “the symptoms and progression of the disease can vary,” as can life expectancy.
Rhode said she first noticed early symptoms of ALS in November of 2016 while exercising.
“When I’d be hiking or working out things would be more difficult. But I just thought I was out of shape or something. And then they just kept getting worse.”
In July of 2017 she was diagnosed with ALS while at the Mayo Clinic in Minnesota.
“It was definitely very hard,” Rhode said, her voice breaking to tears. “But everyone was really supportive. All my family and friends have been here and they help with everything.”
Today, she relies on a walker at home and rides in a wheelchair when in public. Her hands have grown weak and her speech has been affected.
“It’s hard, her whole life’s changed,” Pam said.
Rhode served as a school counselor at Earlville High School for six years before moving to Ottawa Township High School for the past two years. Due the progression of the disease, she was forced to leave her position before the start of this school year. But she’s still there in spirit, and said her former colleagues and students at both schools have rallied behind her with support and fundraising efforts, including an Ice Bucket Challenge hosted during a football game at OTHS and a golf outing organized by a former coworker at Earlville.
“I like working with high school kids. I enjoy it a lot,” Rhode said. “I just love being in the school environment.”
Since her diagnosis Rhode has been trying to make the most of life. She went on a road trip with her four sisters in April down the Pacific coast and took other voyages out east, to Nantucket, Mass. and Savanna, Georgia.
“We took an 11-day west coast road trip,” said Jennifer’s sister Jill Margis, “We started in Seattle and went down to San Diego. We did a Facebook group called ‘The Minivan of Fun, Cruising on the 101’ for people to follow along.”
Rhode wants more people to learn about ALS. Awareness of the disease, which has also been called Lou Gehrig’s Disease, has increased since 2014, when the Ice Bucket Challenge fundraiser became a viral social media phenomenon.
“I feel (knowing about ALS is) more common, but a lot of people still really don’t know what ALS is,” Rhode said.
She also has message.
“Don’t take things for granted.”
“We just take it day by day,” Rhode said. “We try to do everything that we want to enjoy now.”
Rhode said she was honored her team has been selected as Team Chairs at Saturday’s Walk for Life,, and is looking forward to the event. Not only will her team of around 100 members of family friends and well wishers lead the walk, her sisters and a friend will also give speeches.
“Seeing how much people want to support her and be there for her is amazing,” Jill said.
To support team “The Rhode to a Cure” in the 2018 Les Turner Foundation ALS Walk For Life, visit http://bit.ly/RhodeToACure
Chris Yucus can be reached at (815) 220-6934 or email@example.com. Follow him on Twitter: @NT_ChrisYucus.