RunnersElla Kliger – Contributing Writer

Go Tell It on the Mountain, touted as the most challenging 5K in Macon County, held Saturday, March 19, will become an annual fundraiser sponsored by the Otto Community Development Organization (OCDO).

Tom Young, vice president of the OCDO, is working with a team on the roof repairs that are needed for the Otto Community building built 40 years ago. Time has taken its toll on the roof, creating a series of gaps for water seepage. “This is the first time we’ve actually had some money to work with [from the 5K], so now that we have that little bit of purse we’ll focus more on it and get it tied down now.” said Young.

Betsy Hunter joined the OCDO nine years ago when she moved to Otto, and has been the secretary for the board for six years. Hunter was much in demand during the event being approached numerous times by people thanking her and asking her questions.

The structural challenges of the building are on the board’s agenda as essential to moving forward.

“The roof is the first thing. You’ve got to start at the top and work down. The last couple Runners aof years we’ve had to put out garbage cans to catch the water inside the building,” Hunter said. “We are going to try to do some more grant writing. Aside from the roof, we want to fix the floors where the tiles have cracked from rain, and refurbish the bathrooms.”

“I would invite people to come to our monthly pot luck meetings,” said Hunter. “Enjoy some of the speakers that we have, learn what we’re doing and then volunteer in an area that they’re best at for whatever project we’re on.”

The meetings are held on the first Monday of each month.

“That would be what I would want most, for more people in the Otto community to come to our monthly meetings, see the needs of the community, and volunteer to do these things. We had a really, really good group of volunteers who worked on this [5K] and we’ve come together, kind of like a family. It’s grown, the number of people that are coming in the last couple of years, and that’s exciting. We’ve got a new sign down there recently, Cabin Creek Timber Frames donated the materials and made the outside of it,” she continued.

An average of about 40 people attend the meetings. Among the summer fundraisers currently in the planning stage is a Dinner Theatre and an Ice Cream Social. Hunter will be the producer of the show, “Grand Ole Opry.”

The $7,150 that nearly 50 participants and dozens of sponsors and donors raised after expenses from the 5K race and one mile walk will be split evenly between the OCDO and the Cystic Fibrosis Foundation.

Crowd after run“I really want to educate the community. Cystic Fibrosis is not a contagious disease. A lot of people, when they hear that a child in their child’s classroom has it, they think, ’Ooh, is my child going to get it?’ I really want to educate people and, of course, raise funds for it, to make people more aware of the disease. It was kind of a hard pill to swallow when my son called me to tell me [that two of her granddaughters had CF]. You want to make things right for your kids and you can’t do it. But we know all the meds and how to do it so when both parents have to be gone, we just close the house and go over there… We’ve gone over and told them, ‘Just take the weekend off, get away from it all’, because it’s a hard routine every day.”

When asked how she keeps up her spirits, she said,”My church is really good. Today, I feel like everything today was God orchestrated. That’s my support group,’” said Hunter.

For more information about OCDO, send a message to the Otto Community Facebook page or call Ann McClure, president of OCDO, 828-369-6342.

It’s all about the cure

Great strides have been made toward a cure for Cystic Fibrosis (CF) using gene therapy. More than 1500 variants of the gene mutation that causes CF have been found, and each of those will likely require a slightly different cure. This is why fundraisers are critical to the mission to find those cures. More than a dozen people met each week for nearly three months to organize the Go Tell It on the Mountain 5K that was held last Saturday.

The race had a steep elevation that left runners breathing hard.

“I know it was challenging. Along with that challenge, the people with Cystic Fibrosis have the same challenge as we had today on that mountain, not being able to breathe,” said Teresa Young, the District Representative of OCDO and the Go tell it  Mountain 5K Organizer. ”As we were up there, not being able to breathe, huffing and puffing, and you probably could hear us all the way down here, that’s what they deal with daily.”

Treating CF is a strain on the patient and the family. A day might start with medications, breathing treatments, and a percussion vest. The vest does exactly what it sounds like; it compresses the chest repeatedly to loosen thick mucus in the lungs. It may cause some pain or discomfort and requires sitting still for the treatment while connected by hoses to the machine. Then, the person typically takes enzymes before every meal to assist in digestion with more medication during the day. At night, a nebulizer treatment and another round with the percussion vest. This is what two of Hunter’s granddaughters, Gwyn and Abby, experience every day.

While parents are stressed about their child’s health, they are likely worried about the costs of the disease. The Cystic Fibrosis Foundation can help. According to Rachel Staton, director of Development for the Charlotte chapter, “We have a patient assistance program…It’s now called Compass. It is our foundation’s way that we are able to assist our families. Caregivers, parents, patients, whoever it is taking care of their loved one with CF.  It’s multi-faceted. We assist with issues with insurance. We want every single person to get the drugs that they need. They are hugely expensive … one medication may be $300,000 a year. We help with legal issues. Mental health is hugely important to us in our community… Compass is there to assist getting these patients the access to mental health that they need.” CF Foundation also assists with financial aid for schooling and help with travel expenses to medical centers.

Because patients have compromised lung function, in order to reduce the spread of germs between people with CF, “the Foundation’s attendance policy recommends that all people with CF maintain a safe six-foot distance from each other at all times while attending an outdoor Foundation-sponsored event.” Staton pointed out that this limits that support available to individuals. “It’s a pretty strict infection control policy that we have…Having CF can be very lonely. You can’t be around others with CF. People with cancer, they can all get together, chat and talk about their experiences.” She said that when they host an event, particularly an indoor event, they can only invite one person with CF.

“We are paving the way for genetic research,” said Staton. “It’s going to help with so many genetic diseases down the road. When we’re able to kind of lock this up, cure this disease, work ourselves out of a job, which we all want more than anything, when we see these kids and know the life they have ahead of them…I can’t even imagine.” She summed up the work of the CFF with, “The more opportunities we pursue, the greater our odds of success and the quicker we will get to the finish line.”