Blog Update: Our Cystic Fibrosis Swim-a-thon raised $7,288! John McGrath was the highest individual fundraiser and Team Shane was the highest fundraising team. Team Katie has the highest level of participation by her team members. Here is the fundraising site with the details.
Congratulations to Seton Swimming for completing our 8th Annual Cystic Fibrosis Children’s Miracle Network Swim-a-thon. As a team, we have raised over $5,200 so far and had 38 swimmers participate. 29 of them were able to complete at least 200 lengths of the pool before they had to close the pool – that’s 5,000 yards or nearly 3 miles!
We will keep the fundraising site up and running through January 15th so that each Fundraising Team has a chance to finish the job. Here’s a link to our latest totals.
Today’s swim was truly a great accomplishment for many of these swimmers, particularly some of the younger 7th graders. I was even more proud of sophomore Maddie Given. Maddie has Cystic Fibrosis and completed the entire 200 lengths! What an amazing display of both personal courage and medical progress in fighting this disease. Maddie was the personification of what we were doing here today.
Another great example of courage I saw today was first year swimmer, senior Lauran Curley, who completed all 200 lengths of the pool in spite of the fact that she has never swum before this season. I was so proud of Lauran today.
Thank you to the Given family for their great job in organizing the event! Right before the event, Mrs. Given gave us an inspiring and touching talk on why we were all there. The money we raised went directly to Johns Hopkins where many of the Seton families fighting this disease go for treatment.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It can also obstruct the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond – the median life expectancy is now in the late 40s.
There are a number of families close to the Seton community affected by Cystic Fibrosis and all of the life limiting challenges it imposes including the Given’s, the Kohlhaas’ and the Manley’s. The wonderful news is that scientists are closer than ever to a cure. The scientists we are supporting at the CF Foundation and Johns Hopkins University are studying new medications right now that hold the promise for a normal life for those who struggle with Cystic Fibrosis.
In January of 2012, the year we first swam our Seton Swim-a-thon, the CF Foundation announced its new medication, Kalydeco, which essentially cures one mutation of the disease. This medication works effectively in 4% of the CF population, but we can help the other 96% who hope and pray that the cure is found for them.
In the past five years, research funded by money like the money we raised this past weekend led to a new drug called Orkanbi which showed remarkable results with the Given kids. Another drug in the pipeline is Vertex 809 which, if it works, will cure the most common mutation and impact the lives of the greatest number of people affected by Cystic Fibrosis.
Very recently, there has been an exciting new development with a new drug called Trikafta. Trikafta attempts to treat the underlying problem at the cellular level. They call it a “potentiator” that opens the channels in the cell walls to allow sodium chloride ions to pass through. One common test for Cystic Fibrosis is called a “sweat test”. Doctors can test the salt content of the sweat to determine if the body is properly absorbing all of the salt it needs.
Here were the swimmers who performed so well this morning:
- Anne Konstanty (12), 1:11
- Jacob Alsup (12), 1:12
- Emily Flynn (10), 1:21
- Joey Arnold (12), 1:21
- John McGrath (11), 1:22
- Lilly Byers (10), 1:23
- Connor Koehr (7), 1:23
- Shane Koehr (12), 1:27
- Justin Fioramonti (12), 1:27
- Christian Ceol (12), 1:29
- Teresa Bingham (10), 1:34
- JJ Brox (9), 1:34
- Ceili Koehr (10), 1:35
- Joey Dealey (9), 1:35
- Mick Fioramonti (8), 1:36
- Jerry Dalrymple (11), 1:38
- Maddie Given (10), 1:38
- Kathleen O’Malley (12), 1:39
- Peter Konstanty (8), 1:39
- Jeremy Kleb (12), 1:40
- Haley Fifield (7), 1:47
- Shannon O’Malley (7), 1:49
- Elizabeth Dwane (10), 1:53
- Patrick Hartung (9), 2:02
- Michael Brox (7), 2:06
- Elodie Brox (7), 2:07
- Amelia Geary (7), 2:08
- Sophie Zadnik (10), 2:13
- Lauren Curley (12), 2:38
- Mary Clare Waldron (10), 160 lengths
- Jed Albin (8), 160 lengths
- Peter Hartung (7), 160 lengths
- Mary O’Malley (10), 150 lengths
- Clare Flynn (8), 142 lengths
- Theresa Dwane (12), 122 lengths
- Caroline Griffin (11), 120 lengths
- Kyle Da Re (11), 120 lengths
- Jack Champney (8), 120 lengths
I’m very proud of what we accomplished today. Not only did we do some small part to help find a cure for Cystic Fibrosis, many of us learned a valuable life lesson: that we are capable of so much more than we think we are.
Great job Seton Swimming!
Coach Jim Koehr