Cure CF Louisville

Cure CF board members and volunteers presented a check for $100,000 to Norton Children’s Hospital in June.

In just three years, Cure CF has raised more than $1,000,000 for cystic fibrosis research. This month, they’re gearing up for Give for Good Louisville on Sept. 13 and their CRAFT fundraiser on Oct. 13. To learn more, we spoke with the nonprofit’s executive director, Joey Klausing.

How it Started

“Cure CF began in 2015 as three sets of parents of kids battling cystic fibrosis sat around in a pub drinking beers and tried to figure out how to rally the Louisville community around finding a cure for this disease,” Klausing recalled. “We’ve been to a lot of fundraisers and we wanted to create an event that showcased the very essence of Louisville without the usual high-dollar ticket. We started out planning CRAFT, not thinking about the organization behind the event. Now, we’ve expanded our board to include other families who have been impacted by CF.”

Now, they host more than just CRAFT. “We plan two large events and a number of smaller events with our community partners throughout the year,” he said. “This spring we hosted SpiropaLOUza presented by the 502 Bar & Bistro in Norton Commons. Nappy Roots and Branch & Dean headlined, and the hospitality of Norton Commons, who hosted us for this event, just made for an incredible evening. We ended up raising around $90,000 for that event, and are in the planning stages of SpiropaLOUza 2019 with an even bigger headliner.”

Local and National Impact

Cure CF’s board believes the fastest route to a cure for cystic fibrosis is research, so they direct their funds to research at a local and national level. “Through the Cystic Fibrosis Foundation in Bethesda, Maryland, we earmark all funds we donate to research,” Klausing explained. “Locally, we support the Norton Children’s Hospital Foundation, specifically the Kentuckiana Cystic Fibrosis and Respiratory Care Center. In 2017, we pledged $300,000 toward that center over three years, and we’ve already contributed $210,000 toward our commitment.

“Our funds have allowed Norton to secure research status that allows it to be competitive in the clinical trials landscape for CF,” he continued. “Since our commitment, Norton has already secured four clinical trials, including a major tripletherapy trial specific to many CF patients who have genetic mutations that haven’t allowed them to participate in previous trials. We have an amazing relationship with Vertex, a pharmaceutical leader in CF research, and we believe that relationship has also benefited Norton.”

The Give for Good Goal

2017 was Cure CF’s first year participating in Give for Good Louisville. “We learned that our board is quite competitive,” Klausing revealed. “All of the incentives for gift matching really enthused our team. We ended up raising around $20,000 through both individual donations as well as by unlocking several matching opportunities.”

Since they were new to the Give for Good scene last year, they didn’t have much of a strategy, but that will certainly change now. “This year, we know the format and the expectations and hope to use storytelling to engage our donor base as well as utilize some corporate matching opportunities to help our momentum through the entire day. We have an arsenal of graphics, gift matching, our cute Cure CF kids and social ambassadors to help us sweep first place in our category.”

Joey and Luke Klausing.

A Million-dollar Difference

“When we were working on our annual report for 2017, we realized that in just three short years we had increased our fundraising by 380 percent,” Klausing reports. “This is a group of parents – just volunteers with no staff and no overhead. We are working our tails off to ensure our children aren’t robbed of their adulthood due to this devastating disease. Since our inception in 2015, we’ve raised more than $1,000,000. If you’d told me this is where we would be in 2018 when we sat down over beers that night in 2015 and dreamed up our first event, I might’ve cried. I might still cry. One million dollars in any nonprofit space is a big deal. For a small group of volunteers with no real previous event planning experience, it’s quite incredible.”

Cure CF has a dedicated and giving board made up of 13 individuals, all of whom have been touched by CF directly. They also have roughly 200 volunteers each year to help with their events.

Preparing for CRAFT Louisville

Klausing says that CRAFT is an event for the people, not just the cause. “Where else can you sample beer and pizza from the best breweries and pizzerias in town all while supporting a great cause?” he asked. “We created this event to be a fun, laid-back party. We didn’t want another stuffy, plated dinner. There’s a live band, obviously great beer and pizza and just a time to have a fun, adult night out. The atmosphere is incredible. We’d love everyone to be a part of it. We always need volunteers, who can grab a shift using a link on our website and then stay to sample with a $20 volunteer ticket, or you can just come and enjoy yourself all night at our VIP or regular ticket levels. All tickets are available for purchase at curecf.yapsody.com.”

How the community Can Help

Cystic fibrosis is a rare genetic disease. “We desperately need help spreading the word,” Klausing said. “Cure CF representatives have been invited to Washington three times now to lobby on behalf of the CF community, but our legislators really need to hear repeatedly about the plight of these amazing CF warriors.

“Our children are affected when legislators make decisions about pre-existing conditions,” he continued. “Give them a call and tell them that we max out our out of pocket expenses on the second day of a new plan year with medications alone. Our children go through two hours of percussion therapy a day in order to stay alive. Imagine being strapped to a vibrating vest for an hour in the morning and at night to help clear your lungs of mucus – and one of those vests will cost you roughly $16,000 out of pocket.”

Thankfully, Cure CF is based in an exceptionally generous city. “Louisville is so passionate about so many things,” he said. “That is one of the really wonderful things about our community – its philanthropic spirit. We know there are so many places where you can allocate your money, and we would be honored if you’d consider Luke, Alex, Samuel and Cameron – our Cure CF kids – and the other nearly 30,000 cystic fibrosis patients when you make that decision. We truly believe that we will see the day in our lifetime when CF stands for ‘cure found,’ and it could just be your dollar that gets us there.” VT

Cure CF

curecfinc.com

CRAFT Louisville

6 p.m. Oct. 13