Fight of her life
Cindy Crowe goes public with battle against ALS
Since her mother died of the disease 35 years ago, Amyotrophic Lateral Sclerosis has haunted Cindy Crowe.
"I was petrified of ALS, as was my whole family," said Crowe, a 13-year veteran of the Westerville Board of Education. "I didn't really want to look at the reality of it: There is no cure.
"My whole family is like that. We've been frozen in time."
The disease became impossible to ignore this spring.
At age 49, Crowe on March 31 was diagnosed with ALS, also known as Lou Gehrig's disease.
It began as a pain in her right leg.
"I started this year with what I thought was a twisted ankle," Crowe said. "Every time someone told me I didn't have ALS, I was thankful."
The diagnosis came, however.
The disease affects the neurons in the brain and spinal cord. The neurons degenerate and then die, over time making it impossible for the brain to control muscle movement throughout the body.
It's estimated that 5 to 10 percent of ALS patients inherit the disease, as Crowe did. Testing revealed her ALS is caused by a gene mutation affecting the body's SOD1 enzyme.
Since her diagnosis, Crowe has lost the use of her right leg, and she has begun to see a loss in the use of her right arm and hand.
Nevertheless, Crowe said she feels better physically than she did as she awaited a diagnosis.
She's been placed on the one drug that is FDA-approved for ALS, and she said she feels much of her energy has re-emerged, and the muscle twitches characteristic of ALS seem to have slowed.
"I feel great, in general," Crowe said. "I feel like I've kind of plateaued."
Crowe was 15 years old when her mother died of ALS.
She said she remembers hearing the diagnosis and feeling the hopelessness attached to fighting a disease that affects only about 30,000 Americans at any given time, according to the ALS Association.
"They really knew nothing about ALS," Crowe said.
She said she thought, "Who would dare break into (researching) this disease? Medicine's all about money."
In the last 30 years, however, the disease has become well-researched, and Crowe's goal now is to aid in that research as much as possible.
"I'll continue to do as many clinical trials as I can," Crowe said. "There is nothing I can do better in the world right now than to share this gene."
Crowe, who worked as a teacher before becoming a stay-at-home mom and then a school board member, said her fight with ALS should be about education.
"I've been focused on education, and I'm not going to stop that," she said.
Of the 200 clinical ALS trials going on worldwide right now, Crowe found 12 that focus specifically on the SOD1 type of the disease.
She met with two doctors involved in studies before choosing to participate in a study at the Cornell Center of Research in New York.
"They live, eat and breathe SOD1," Crowe said. "They are going to find a breakthrough in this; I'm confident of that."
Crowe traveled to New York City earlier this month for her first round of testing.
She'll continue to take the trial medication before returning to New York for more testing later this year.
In other patients, Crowe was told, the medication has been shown to slow the advances of ALS by 15 to 20 percent. Doctors won't share the results of her testing with her until after the trial, she said.
Back home in Westerville, she's teamed up with others who have been touched by ALS, mostly through the deaths of loved ones from the disease, to form a foundation, dubbed "Crowe-Wentzel: Winning the ALS Fight With Cindy."
The addition of Wentzel to the foundation's name is a nod to Crowe's mother; Crowe's maiden name was Wentzel.
The foundation is planning its first major fundraiser, a walkathon and campout, July 27 and 28. The funds raised will help ALS patients such as Crowe participate in clinical trials.
A team of Westerville teachers also has formed to participate in an ALS Association walk in September.
The blessing in disguise of the diagnosis, Crowe said, is the outpouring of love and support from people in the community, some of whom were strangers.
"What it's brought out is beautiful people who have been connected with the disease that have become my friends," Crowe said. "I love that, and, hopefully, we can work to make a difference."
Crowe said she knows support will make a difference for her two college-aged sons, who she said she doesn't want to feel alone in the fight.
"My kids really need it," she said "My kids need to know that Westerville cares about them. They have a big family here."
Despite being diagnosed with a disease that kills 80 percent of those diagnosed within five years, Crowe remains optimistic and determined.
After serving 13 years on the Westerville Board of Education, Crowe said she doesn't plan to give up her seat any time soon.
"I have no intention of leaving until I can't speak any more, because education is so important to me," Crowe said.
She said she also will continue public service work on causes important to her, such as with Rotary and the Westerville Education Challenge, which raises money and orchestrates the anti-bully program Challenge Day in Westerville's high schools.
And fighting and raising awareness about ALS has become key, Crowe said. She's going public with news of her illness for that purpose.
"Unfortunately, a lot of other people have this story, and we need to do something about this," Crowe said. "It's time we take it on. We're going to fight it until I don't have a fight left, and then we're going to pass it on."
Crowe said her doctors also have helped her feel the hope her mother lacked after her diagnosis.
"She was just a number, and they sent her home, and I don't think they gave her any medication," Crowe said.
"We're knowledgeable about all the things that can happen, but we're not hopeless. There's hope."
While in New York, Crowe said she told her doctor she wanted to be involved in research so she could help have an impact on the next generation of ALS patients.
She said her doctor corrected her: "His response was, 'This is going to have an impact on your generation.' "