LANSING, Mich. — Laura Bonnell thinks every day about her daughters Emily and Molly and their ongoing battle with cystic fibrosis. It's something they'll be living with for the rest of their lives.
"Cystic fibrosis is a genetic disease. It's a chronic illness. So you're never out of the woods. It's constant," she said.
"You need mental strength. You need therapy. You need good mental health. You need to be as physically in good shape as possible. There's just so many variables, and cystic fibrosis affects all your organs. So it's just a lot for somebody who has the disease and for parents."
Laura and her husband didn't know they were carriers when the girls were born.
"We had no idea until we suspected that Molly had some of the cystic fibrosis symptoms, and then everything just grew from there, just a need to raise awareness," she said.
Laura started The Bonnell Foundation: Living With Cystic Fibrosis as part of that effort to raise awareness. The foundation provides financial assistance, lung transplant grants and college scholarships.
Since Emily and Molly were born, Laura says life expectancy for someone living with cystic fibrosis has risen from 19 years to 50 years. That's thanks to medical advancements that Laura says need to continue.
"It's really important that we keep looking at science and innovations so that we can eventually get a cure, but certainly continue all the medications that are coming out to help with that diagnosis," Laura said.
In order to keep those advancements coming, and to help other families of patients with rare diseases, Laura is advocating for Michigan to establish a Rare Disease Advisory Council (RDAC).
"It's been approved in 21 states already and we're hoping to have it approved soon in Michigan," she said.
"This Rare Disease Advisory Council will give everyone a voice. It gives lawmakers access to all sorts of people — social workers, geneticists, parents like myself, people at foundations, patients, insurance companies. Everyone gets a voice in the RDAC, so it's really critical and will be very helpful to lawmakers," she said.
The entire Michigan House of Representatives has already approved the council. A senate committee is expected to take up the issue on Thursday, March 3. It still needs approval by that senate committee, the full senate, and Governor Gretchen Whitmer.
"Once it's passed, we're really hoping this will just propel us in the legislature so that we can all get working on the same things and be looking out for everyone in our community," Laura said.
Michigan State University, Helen DeVos Children's Hospital, and others will host a virtual seminar on rare diseases at 7 p.m.
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