Midlands mom takes advocacy for diabetes funding to Washington
Beth McCrary never thought she’d be a person who constantly tracks legislation, but on March 26, she was just that, checking her phone often for updates as the United States House of Representatives prepared to vote on the Medicare Access and CHIP Reauthorization Act. The bill, which did pass the House, includes $150 million in funding for research to cure Type 1 diabetes, and pushing for that type of funding has become a central part of life for the Columbia woman.
It started for McCrary and her family on August 21, 2008, a date she says she will never forget. Her daughter Hannah, then 7, was diagnosed with Type 1 diabetes, and everything changed. “We left the hospital and my husband said ‘I feel like we’re bringing home a newborn,'” McCrary said. Parents of a child with diabetes are asked to learn a whole new set of rules, and since the onset of the disease is typically very sudden, there is no time to prepare.
“When your child is diagnosed, we liken it to trying to get a sip of water out of a fire hose. That’s how much information is being thrown out to you,” she said.
Since that day McCrary, a sales associate and buyer at Todd and Moore, has devoted much of her spare time to serving as advocacy team chair for the Palmetto Chapter of the Juvenile Diabetes Foundation (JDRF). She said she knew nothing about the organization before Hannah was diagnosed, but soon found their help indispensable.
“We were literally met at the door of our hospital room at Palmetto Health Children’s Hospital by JDRF. We were given what is called a Bag of Hope,” she said, describing the backpack that contained essential information for beginning to care for a child with Type 1 diabetes, and where to go for help.
That help inspired McCrary to volunteer for JDRF, and in her advocacy role, she recently returned from a four-day trip to Washington, D.C., where she met with South Carolina’s legislators to explain the importance of continuing to fund research for a cure.
“What better person to go in and tell the story than those who are living it?” McCrary said. She said that as with many diseases, funding makes a huge difference. “Just in the seven years since Hannah was diagnosed, the things that are becoming available, the different research projects that are going on, almost exclusively funded by the JDRF, are incredible. These are things that 10 to 15 years ago no one thought would ever happen.”
With those recent advances, Hannah, now 14, is managing the disease “beautifully,” according to her mom, and starts high school at River Bluff in the fall. Still, McCrary said more needs to be done. JDRF is working to fund ways to prevent both Type 1 and Type 2 diabetes, to help those who have the disease manage it, and ultimately to find a cure.
“I’m always stunned and shocked by how much research costs, but it does,” she said. “We’re leaving great science on the table because we don’t have enough money to fund it.”
All over the country, JDRF chapters are working to change that. The organization raises around $100 million each year through private fundraisers in addition to lobbying Congress for help. Beth said aiding that lobbying is something anyone can do.
“I’m kind of embarrassed to admit it, but before I became passionate about our advocacy program, I really had that mindset that my one voice or vote didn’t really matter, but it does,” McCrary said, noting the five lobbying trips she’s taken to Washington, D.C. where she’s seen the truth of her statement firsthand. “When we call [legislators], when we email them, all those calls and emails are logged. That’s how they know what’s important to the folk back home.”
Though diabetes funding is McCrary’s passion, she said that learned lesson applies on a much wider level. “I just want everybody to know that they have that opportunity, to be a part of advocacy for not only this cause but any cause, and how important it is to let your voice be heard, to share your story.”
Those interested in advocacy or learning more about the JDRF can find more details here.