Second Shoot for the Cure aims high

The Shoot for the Cure fundraiser will light up the Snowshoe Gun Club for a second time on Oct. 3.

Participants will shoot a total of 75 birds in five-person teams to raise money for research on cystic fibrosis.

Cystic fibrosis is a rare disease that causes a thick buildup of mucus in the lungs and other organs, making it difficult to breathe and gain weight normally.

Patients are born with the disease and live with it their whole lives — there is no known cure, according to the Cystic Fibrosis Foundation.

Karen Rey of Anchorage has been organizing fundraisers for research since 2006. She has been involved in fundraising work generally, but began to focus on raising money for cystic fibrosis after learning that because the disease is relatively rare, there is not the focus on clinical trials and drug development that there is for more common diseases.

Rey’s daughter Mattie Deaton, 23, has cystic fibrosis and attends college in Arizona, managing her condition through self-administered chemotherapy, medication and a medical port in her chest.

“One of the things my daughter says is that you may have to fight a battle more than once to win it,” Rey said. “She faces so many challenges. It’s my dream that patients with CF will be able to live with it the way other patients can with diabetes.”

The first event in Kenai drew a lot of interest last year, and the number of teams signed up has tripled from three to nine, Rey said.

Several organizations from the community, including Central Peninsula Hospital and Kenai Spine, have returned as sponsors as well, so they have already surpassed the funding goal from last year, she said. A team of five can enroll in the event for $1,500.

The funding will go to research and to promote awareness of the condition. More than 30 five-person teams will participate this year.

The first Shoot for the Cure event, held in 2006 in Anchorage, brought in about $90,000, Rey said. This year, the Anchorage event raised approximately $150,000 and included nearly 200 participants, she said.

The Kenai event is currently the only other one in Alaska, but she said she hopes to expand it in the future.

“I’ve been asked to mentor or develop a shoot in Oregon, in Denver, in Dallas,” Rey said. “My thoughts were that I would love to see this become a cystic fibrosis fundraising franchise.”

The funds don’t all go to research.

Cystic fibrosis patients often struggle with grades because they are absent from school for medical reasons, so they miss out on scholarships, Rey said.

The foundation offers a $1,000 scholarship each year to any cystic fibrosis patient who wants to further their education.

The condition is limiting in terms of physical activity as well, so the nonprofit offers another scholarship that allows cystic fibrosis patients to participate in activities such as horseback riding that help them feel “more like kids,” Rey said.

“One thing I found with my daughter is that they don’t look sick, but they live every day coughing continually, short of breath, (with) so many medication and physical therapy requirements that it’s just daunting to participate in anything like yoga or join a gym,” Rey said. “Yet those are the things that really help them.”

Cystic fibrosis is classified as a rare disease, affecting approximately 30,000 people in the U.S.

The approximately 65 people diagnosed with the disease in Alaska struggle to access services as well as clinical trials because of remote locations and health care access, according to the Cystic Fibrosis Foundation.

The U.S. House of Representatives is considering a bill, H.R. 209, to increase compensation to patients for participating in clinical trials for rare diseases.

It is an extension of a current act that allows patients to be compensated up to $2,000 for participating in a clinical trial without having it count as income, which could disqualify some from public assistance such as Medicaid.

The act is due to expire in October if Congress does not renew it. Rey said one of the stories that inspired her to start the foundation was that of a young man with cystic fibrosis who died while waiting for a lung transplant because he could not arrange transportation or a place to stay.

The organization is planning to offer “hardship scholarships” that cystic fibrosis patients can use for a place to stay, transportation or any other need they have.

“It’s really been families fundraising for this,” Rey said. “The goal that I’ve had is to lift the burden of fundraising off the shoulders of families with cystic fibrosis and shift it into the community.”

The event will take place at the Snowshoe Gun Club on Boundbrook Street in Kenai. Steve Meyer, the vice president of the Snowshoe Gun Club board, said the growth of the event is positive for the club as well as a good cause.

“We’re pleased to be hosting it, to be able to help out Karen and to do this for the community,” Meyer said. “A lot of the time, shooting and shooting sports are not really cast in a favorable light. This event draws people who are not necessarily shooters and show(s) that no, we aren’t really so bad.”

Some of the participants may not be as familiar with trapshooting as others, so the Snowshoe Gun Club offers coaching and practice shooting before the event, Meyer said.

Individuals seeking some pointers can go out to the range, and the club offers target practice before the fundraiser, Meyer said.

“We’ve had a lot more interest (in the event) this year,” Meyer said. “We knew right from the start that it would take some time to make the community aware of it. As far as we’re concerned, we’ll do this every year, as long as Karen wants to keep doing it.”

Rey said she hopes to establish a sustainable event in Kenai, where the teams come from the area and return every year, the way they do in Anchorage.

“We are pebbles facing a mountain, but we’re making a difference,” Rey said. “Every participant makes a difference.”

Reach Elizabeth Earl at elizabeth.earl@peninsulaclarion.com

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