As she has dedicated her life to improving educational opportunities for children, it’s only fitting that Cindy Crowe would use her diagnosis with a usually-fatal disease as a teaching tool, too.
Crowe has served on the Westerville Board of Education for 14 years. The stay-at-home mother has a bachelor’s degree in education and is a certified teacher in K-8 special reading instruction.
She first got involved with the district via its remediation program in reading, and eventually decided to run for school board out of a desire to make a difference for students. Among her goals have been to improve student achievement and development, maintain financial accountability, and work with legislators on education issues affecting Westerville. She has seen success in all these endeavors, she says.
“During my tenure as a board member over the 14 years, I am most proud of the opportunity to share in the family celebration of educational achievement and shake the hands of approximately 18,200 Westerville school graduates,” says Crowe.
In addition to serving on the school board, Crowe is on the Westerville Area Chamber of Commerce’s Education Committee and a delegate of the Ohio School Boards Association. She’s also involved with the Westerville Education Foundation, OhioReads, Character Education, Read Across America, Westerville Parent Council, Westerville Alumni Association, Westerville Parks Foundation Committee, Kids Voting USA and Rotary Club of Westerville.
Crowe and her husband, Alan, a director at Oliver Wyman Actuarial Consulting Inc., have two grown sons: Brandon, operations manager at Promotions Onc Inc., and Tyler, a student at The Ohio State University. Both are graduates of Westerville City Schools.
In March 2013, she was diagnosed with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s Disease.
ALS is an incurable and progressive neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells that control voluntary muscle movement. It leads to paralysis and is eventually fatal, and has a genetic link; about 20 percent of individuals with ALS had a genetic susceptibility to it.
Crowe is part of that 20 percent; her mother died of ALS when Crowe was 15.
Early symptoms may include twitching, cramping, muscle stiffness, muscle weakness in an arm or leg and slurred or nasal speech.
Crowe’s first symptoms were muscle stiffness and weakness in a leg, which she noticed while exercising. She underwent tests at the OSU Wexner Medical Center, the Cleveland Clinic and Cornell University’s research center in New York City before getting her final diagnosis.
“Since the diagnosis in March of 2013, I have experienced increased paralysis of my limbs and difficult in speaking, breathing and eating, but no impairment of my mental functioning,” Crowe says.
Shortly after her diagnosis, Crowe began looking for ways to raise awareness of the disease, improve treatment for patients and, eventually, help find a cure.
Among her most active partners is Vicki Jarrell, principal at Emerson Magnet School. Jarrell has her own connection to ALS: Her brother, Donald “Donnie” Jarrell, died of the disease in 2005.
Donnie, a special education teacher and triathlete, had bulbar onset ALS, the most aggressive kind. At the time of his diagnosis, he was given six months to live, but lasted 27, Jarrell says.
That up-close experience with ALS – and Crowe’s years of hard work for the schools – inspired Jarrell to offer her assistance.
“I love Cindy – she’s done so much for our community, so much for our school system,” Jarrell says. “She’s just a tremendous individual – so unselfish, so giving of her time.”
Jarrell told Crowe that if she wanted to do anything to raise awareness, to let her know, and a few weeks later, they started the Crowe-Wentzel Winning the Fight Foundation. Wentzel, Crowe’s maiden name, is part of the name as a tribute to her mother.
The foundation raises money to help individuals afflicted with ALS pay such expenses as treatment and travel. Its kickoff event took place in July and included live music, children’s activities, a walkathon and overnight camping.
“We were able to raise $30,000,” Jarrell says.
Though details have not yet been finalized, the foundation plans for spring and summer events this year.
The foundation is also a mechanism to raise awareness. Jarrell has been meeting more and more people touched by the disease, including eight in central Ohio.
“It’s probably the most devastating disease that not many people know about,” she says.
Beyond her work with the foundation, Crowe has sought out other opportunities to improve the survival odds of those who are hit by ALS, including participation in clinical trials.
“I have been determined to fight ALS and I have voluntarily participated in an important research study with Cornell University,” Crowe says.
And she’s still attending school board meetings. Though her loss of limb function means she needs help clipping on her microphone, she’s still participating and doing her homework, as well as offering her help to board newcomers Tracy Davidson, Nancy Nestor-Baker and the Rev. Rick Vilardo.
“There are three new people on the board, and she’s teaching and guiding us and doing a great job,” says Davidson.
Though she was just elected to the board in November, Davidson has known Crowe for five years from their work on Westerville Education Challenge, a group that works to support the anti-bullying Challenge Day program in the school district. Davidson is also on the board of the foundation.
Jarrell describes Crowe as “tireless,” as well as intelligent, clear-thinking, focused, bright, funny and positive. Crowe has always fought hard for public education and opportunities for the district’s children, so it’s appropriate that she’s also battling ALS with aplomb, Davidson says.
“She’s fighting for a cure, and I think she’s doing a good job,” says Davidson.
Information on the foundation can be found at www.fightalswithcindy.org.
Garth Bishop is editor of Westerville Magazine. Feedback welcome at gbishop@cityscenemediagroup.com.
