VERMILLION — In 2017 and 2018, Chris and Katie Kassin held special activities to raise funds in honor of their daughter, Collins, who has cystic fibrosis. The money raised at those two events was donated to the Cystic Fibrosis Foundation to help find a cure for Collins and all others who battle this illness.
Last year the Kassins noticed something unique. Their neighborhood event had grown. So this year, they decided to seize that momentum and go big.
The result was last weekend’s Cure for Collins fundraiser event which took the form of a carnival held Saturday afternoon in Vermillion’s National Guard Armory.
The event featured bouncy castles, a number of carnival games and a host of items donated by area merchants that were sold at a silent auction to help raise funds. People who visited the carnival could also purchase T-shirts with the sale’s proceeds going to the Cystic Fibrosis Foundation.
The bigger-than-usual event didn’t disappoint in either the entertainment provided or the amount of funds that ultimately were raised.
“I think it was right about $20,000, give or take a few dollars,” Katie said Sunday afternoon. “It’s pretty cool … last year our theme was butterflies, the year before was trolls. The past two year’s events were backyard barbecues – we just had them at our home and opened up our garage. And last year was the first year for the silent auction.
“Last year it just got so big that we felt that we really needed to move it someplace else,” she said.
Katie quickly expressed appreciation Sunday for all of the volunteers who helped make Saturday’s event possible.
“There were some people who had their own things – there were USD PA students there to help who had their own t-shirts on, but I think we had about 30 volunteers,” she said. “I know we had more people visit than last year and last year we estimated around 250. This year, I think it was probably double that. We had a ton of people through there. We asked several different people who were there and they agreed that total attendance was right at around the 500 mark.”
In a recent Facebook post to help make the public aware of the carnival, the Kassins describe their daughter and the daily ordeals she faces while living with cystic fibrosis.
“Our daughter Collins, as many of you know, is a spunky 5 year old with an infectious smile and a giggle that will melt your heart. She has a heart of gold and wants only to make everyone around her happy,” the couple wrote. “When she was 12 days old, she was diagnosed with cystic fibrosis. She is a fighter beyond imagination and stubborn. She is wise beyond her years when it comes to this disease. She can tell you about the drugs that she takes and reminds us to give her her medications. She can swallow six pills at a time, and on average, she takes almost 40 pills a day.
“Our hope is that by awareness and fundraising, that one day, this won’t be Collins’ reality. Our hope is that one day, she can wake up in the morning and not have to worry about doing her treatments before she leaves the house. Or that she can have a meal without taking enzymes to help her digest it and gain weight,” the Kassins wrote. “And we hope that one day, when she is sleepy at night, she can just go to bed, without having to worry about doing her treatments before she goes to bed. I hope that one day Collins can live a life where CF no longer exists. Where CF only means Cure Found.”
Katie said there are two underlying reasons for the push she and her husband have made in the past three years to raise money for the Cystic Fibrosis Foundation.
“The more personal one is that I never want Collins to go through anything alone,” she said, explaining that other people with CF can’t be around her. “It’s something where someone can feel very isolated in it when someone who has the same disease as them can’t be there to support them.”
People with CF can communicate these days online “but if they’re around each other, they can make each other sick,” Katie said. “So, I want people to understand what she goes through. When she goes to school, she has to take medicines at school before she has anything to eat. I don’t want kids to say, ‘why are you having to take medicines?’ or ‘why are you having to do this?’ If she’s sick and has to leave her classroom and go the nurse’s office to do her treatments, I don’t want them to say, ‘why are you doing that?’ I want her to be very much accepted for that and for people to understand what she’s going through.
“Maybe they can empathize with her and support her more in an emotional and supportive manner, where they’re there for her and cheering her on rather than being worried or scared by her quote-unquote disability,” she said.
The second reason for going through much effort to plan and organize the fundraiser, Katie said, is “fifty years ago, people with cystic fibrosis often times didn’t live long enough to see elementary school. So much money has gone into research for therapies and drugs and because it is a relatively rare disease, there’s not a whole lot of money that’s given for cystic fibrosis research by the government. The Cystic Fibrosis Foundation is basically where all the money is coming from for research.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.
In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, minimizing contact with germs is a top concern for people with CF.
In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.
Symptoms of CF
People with CF can have a variety of symptoms, including: Very salty-tasting skin, persistent coughing, at times with phlegm, frequent lung infections including pneumonia or bronchitis, wheezing or shortness of breath, poor growth or weight gain in spite of a good appetite, frequent greasy, bulky stools or difficulty with bowel movements.
Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene — one copy from each parent. Both parents must have at least one copy of the defective gene.
The defective CF gene contains a slight abnormality called a mutation. There are more than 1,700 known mutations of the disease. Most genetic tests only screen for the most common CF mutations. Therefore, the test results may indicate a person who is a carrier of the CF gene is not a carrier.
Diagnosing cystic fibrosis is a multistep process, and should include a newborn screening, a sweat test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center. Although most people are diagnosed with CF by the age of 2, some are diagnosed as adults. A CF specialist can order a sweat test and recommend additional testing to confirm a CF diagnosis.
According to the Cystic Fibrosis Foundation Patient Registry, in the United States:
More than 30,000 people are living with cystic fibrosis (more than 70,000 worldwide).
Approximately 1,000 new cases of CF are diagnosed each year.
More than 75 percent of people with CF are diagnosed by age 2.
More than half of the CF population is age 18 or older.
Cystic fibrosis is a complex disease and the types and severity of symptoms can differ widely from person to person. Many different factors, such as age of diagnosis, can affect an individual’s health and the course of the disease.
Tremendous advancements in specialized CF care have added years and quality of life to the lives of people with cystic fibrosis. There have been dramatic improvements from the 1950s, when a child with CF rarely lived long enough to attend elementary school to today, with many living long enough to realize their dreams of attending college, pursuing careers, getting married and having kids.
Although there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short.
The type and severity of CF symptoms can differ widely from person to person. Therefore, although treatment plans can contain many of the same elements, they are tailored to each individual’s unique circumstances.
People with CF and their families have expertise in how the disease affects them and how the context of their daily lives affects the way they approach their care. By acknowledging the respective roles, people with CF, their families and clinical care teams can work together to develop treatment plans that align personal life goals with health goals.
Each day, people with CF complete a combination of the following therapies:
Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs.
Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer and include antibiotics to fight lung infections and therapies to help keep the airways clear.
Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.
An individualized fitness plan to help improve energy, lung function and overall health.
CFTR modulators to target the underlying defect in the CFTR protein. Because different mutations cause different defects in the protein, the medications that have been developed so far are effective only in people with specific mutations.
The CF Foundation supports research to discover and develop new CF treatments and maintains a pipeline of potential therapies that target the disease from every angle.
Today, the Foundation is focused on developing lifesaving new therapies for larger numbers of people with CF — including those with rare and nonsense mutations — and pursuing daring, new opportunities to one day develop a lifelong cure.
When a group of parents started the Cystic Fibrosis Foundation in 1955, there were no treatments for cystic fibrosis. These parents set their sights high — to advance understanding of this little-known disease, to create new treatments and specialized care for their children and to find a cure.
In the ensuing years, the fundraising and commitment of the CF community has enabled the Foundation to support fundamental research in the laboratory that has led to groundbreaking discoveries, including the identification of the gene and protein responsible for cystic fibrosis. By expanding our knowledge of the underlying biology of the disease and its effect on the body, researchers have paved the way for creating new treatments.
The Foundation’s steadfast commitment to advancing CF research has helped enable 12 new treatments for the disease. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of ivacaftor (Kalydeco®), lumacaftor/ivacaftor (Orkambi®), tezacaftor/ivacaftor (Symdeko®), Cayston®, and tobramycin (TOBI®).
Research by dedicated scientists and clinicians from a wide range of disciplines advances our understanding of cystic fibrosis every day, helping to shape clinical care practices for people living with the disease for years to come. These include studies conducted using patient data in the CF Foundation’s Patient Registry, which are helping us identify trends and track the effectiveness of treatments.
From bench to bedside, the Foundation is supporting the best research here and abroad to improve the quality of life of people with CF today and accelerate innovative research and drug development to add tomorrows. Two major initiatives have launched recently that will help us in this mission.
In 2018, the Foundation announced that it was committing $100 million to the Infection Research Initiative, a comprehensive approach to improve outcomes associated with infections through enhanced detection, diagnosis, prevention and treatment. The Foundation also is actively pursuing and funding a broad portfolio of new treatments for other complications of the disease, such as inflammation, excessive mucus, gastrointestinal problems and cystic fibrosis-related diabetes.
The second major initiative concentrates on people with nonsense and rare mutations who will not benefit solely from CFTR modulators and need an effective treatment for the underlying cause of their disease. The Foundation has thus far committed over $72 million to the Nonsense and Rare Mutations Research and Therapeutics Initiative, a multifaceted effort that already has funded more than 60 projects over the past several years at both academic institutions and pharmaceutical companies.
By pursuing these bold strategies and others, the CF Foundation continues to build a robust pipeline of potential new therapies that fight the disease from every angle.