Grace McNeilly, a Gainesville resident, started having digestive complications when she was just 3 years old. Her family took her to the doctor to see what was wrong and, after numerous tests, found out she had cystic fibrosis.
That’s why her father, Michael, is passionate about making people aware of the disease and raising money for research to find a cure. To do so, he and Doug Dichting, an investor in Left Nut Brewing Co., will be hosts to “ShamRockin’ for a Cure North Georgia” at Left Nut at 7 p.m. Saturday, March 10.
ShamRockin’ for a Cure North Georgia
Where: Left Nut Brewery, 2100 Atlanta Highway, Gainesville
When: 7 p.m. Saturday, March 10
Contact: 770-324-7328, picatic.com/ShamRockinNOGA
“Cystic fibrosis is not one of the selected research diseases or causes that the federal government funds,” Dichting said. “So all of the money to advance cystic fibrosis research comes from private funding.”
Michael McNeilly calls the event basically just a big St. Patrick’s Day party. It will mimic the one held in Atlanta the past nine years, which has raised more than $2 million. Tickets are $75.
Once guests are in, everything, including craft beer, live music, food and wine, is free. The only other thing to pay for is a bid in the silent auction.
All money raised will go to the Cystic Fibrosis Foundation, an organization that has helped the McNeillys in a big way.
Cystic fibrosis is a hereditary disorder that affects the exocrine glands. It causes thick mucus to build up inside the body, which often results in respiratory infection, something Grace, now 18, has dealt with since she was diagnosed.
There’s no cure. For now, patients just have to live with it as best as they can, taking almost 30 pills a day in Grace’s case, and going through chest physiotherapy to shake out the buildup of mucus.
“It was super stressful learning your child of 3 is going to have something for their whole life unless there’s a cure,” Michael McNeilly said. “They tell us to get ready to get admitted to the hospital just about every year for 20 days at a time trying to clear infections.”
The Cystic Fibrosis Foundation’s venture philanthropy model was able to support and provide funding for a drug called Kalydeco. Since taking the drug, Grace has been doing much better. Instead of having to spend about a month in the hospital each year, she hasn’t been at all in five years.
Grace has stayed active throughout her life, which has helped ease her suffering from the effects of the disease. Her father said she loves painting, being around horses, hiking and swimming. She swam for North Hall High School and for Brenau University during her first semester.
“Through that drug and her staying active, she actually became a distance swimmer and got third place in the Hall County Championships,” Michael said. “Which as a (cystic fibrosis) person is just unheard of.”
Michael has been involved in fundraisers for cystic fibrosis research for quite some time. His family has taken part in Great Strides, a walk that raises money for the CF Foundation and the Rose Pedal fundraiser bike ride.
With the help of the community, the McNeillys have been able to find hope. With the money raised at ShamRockin’ for a Cure North Georgia, they’re hoping to help others even more.
“My church has been amazing,” Michael said. “My faith in God is a big thing, too, and I just believe He’s called me as a dad and person. This is sort of my life and my family’s life and you do the best you can with it. And be positive.”