Confident. Yes. Quiet. That too.
As an advocate for the Alzheimer’s Association, she was one of more than 35 Miami Valley residents who went to the Ohio Statehouse on March 12 to speak with legislators about the needs of families dealing with Alzheimer’s disease. Of that group, however, only one other person could share what she shared – that is what it is like living with Alzheimer’s disease.
“I kind of let someone lead the conversation and I followed that lead,” said Mrs. Lewis, of Englewood. But as the thoughts came, she said she used a “now or never” approach and jumped into the conversation.
Alzheimer’s Association volunteers do a myriad of activities. They lead educational sessions, they support caregivers, they raise money for the cause.
But, the primary role of volunteers who are advocates is to share their experiences with elected officials. Like foot soldiers of the movement, they work on the frontlines growing awareness and support.
Trey Addison, Ohio Public Policy Director for the Alzheimer’s Association, said, “One of the most important groups that will lead to a world without Alzheimer’s is our volunteer advocates. Their advocacy and passion is the lifeblood of the Alzheimer’s Association.”
Today, close to 5,000 Miami Valley residents help the Alzheimer’s Association, Miami Valley Chapter urge legislators to support Alzheimer’s legislation on the state and federal level. They call elected officials, email notes to them and advocate on social media for critical support and legislation.
“I think it’s crucial that (elected officials) hear the stories,” said Norm Lewis. “I think they are more tuned in to that when we are in their offices.” That is because one story can touch a heart. And one heart can move legislation.
In the 20 years since the Alzheimer’s Association has held Ohio Memory Day, which is an event where advocates around the state converge on the statehouse, volunteers have pushed for critical advances in legislation to help families dealing with the disease like:
- The expansion of Ohio’s PASSPORT home care program
- A statewide emergency alert program to help find missing adults who have mental impairment
- The protection of respite funding, which pays for services provided to caregivers.
This year, advocates requested that members of the Ohio General Assembly support the creation and implementation of a state plan to address Alzheimer’s disease and other dementias. Ohio is the only state without a state plan. Last month, State Senator Steve Wilson (R-Maineville) and Ohio Senate Minority Leader Kenny Yuko (D-Richmond Heights) reintroduced legislation to create a process that would lead to an official plan of action to help Ohio confront Alzheimer’s disease and related dementias.
Two high school students – Neal Desai, a sophomore at Centerville High School and Matthew Willis, a junior at Chaminade Julienne High School – joined Miami Valley advocates by meeting with state legislators. Both had grandparents who have died from Alzheimer’s disease.
Advocates often turn the painful family impact of the disease into purpose because Alzheimer’s is a fatal progressive brain disorder that cannot be prevented, cured or even slowed. Christina King’s mother Janet Blazer died from the disease in 2011, after being diagnosed at the age of 58. King started volunteering with the Alzheimer’s Association in her 30s before her mother passed.
She said she questioned whether she should continue since the change she wanted was too late for her mother. But, she said, she decided, “I am not the only one. I am fighting and I want to use my voice for others,” she said.
So today, she not only advocates in Ohio, but she is the Miami Valley Chapter’s ambassador for Ohio’s Tenth Congressional District represented by Congressman Michael Turner. As her Twitter account states, she is a “wife, momma and alzfighter.” As ambassador, she follows and contacts elected officials on social media, she emails notes to elected officials, she shares legislative asks with her contacts and meets with legislative aides.
“Advocacy is year-round,” King, of Kettering, said. When the BOLD(Infrastructure for Alzheimer’s Act) passed that was just an amazing feeling like ‘oh my God we made this happen.’” The new law establishes Alzheimer’s Centers of Excellence in communities around the country to expand and promote effective Alzheimer’s interventions.
King encourages people to jump in and get involved. “Everybody has different amounts of finances and money that they can afford to give or not give, but everybody has the same amount of minutes in a day and I think that as far as volunteering, there is nothing more valuable than your time.”
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