This Blog was updated on January 26, 2024 with our final fundraising totals for the whole event:

Congratulations to Seton Swimming for completing our 12^th Annual Cystic Fibrosis Children’s Miracle Network Swim-a-thon.  As a team, we have raised $12,610 (as of January 25, 2024)!  We also had 61 swimmers participate.  An amazing 60 of them were able to complete the full 200 lengths of the pool!

To put that distance in perspective, it is the equivalent of:

• 5,000 yards
• Nearly 3 miles
• Ten (10) 500-yard freestyle events – in a row
• About 2/3rds of the way across the Chesapeake Bay

We will keep the fundraising site up and running through January 15^th so that each Fundraising Team has a chance to finish the job.  Here’s a link to our latest totals.

As of New Year’s Eve, here are the team standings:

• Team Connor (Koehr)         $2,600
• Team Clara (Condon)         $2,050
• Team Liam (Halisky)           $1,750
• Team Madelyn (Zadnik)    $1,330
• Team Luke (Mantooth)      $1,090
• Team Tempest (TSMV)       $1,000
• Team Maggie (Gibbons)       $900
• Team Michael (Brox)            $840
• Team Haley (Fifield)              $750
• Team Mick (Fioramonti)       $200

Team Connor was able to raise so much, in part, because he was able to engage almost all members of his team, including

• Thomas Keapproth
• Sofia and Daniel Kohlhaas
• Colette, Penny and Cora Kramer
• Joey Lynch
• Julia and Matthew Maranian
• Lionel and Thiago Martinez

Here are the highest Ambassador (i.e., individual) Fundraising totals as of January 25, 2024.  If you didn’t set yourself up as an ambassador and just directed donors to your Team page, I have no way to know who specifically got the donation):

• Lauren Kelley (TSMV)                               $1,000
• Drew, Kenny, Bella and James Nguyen $865
• Maggie Schroer                                           $655
• Haley, Kyleigh and Luke Fifield                $600
• Coach Koehr                                                 $425
• Lauren Kelley (Trinity Meadow View)     $375
• Malia Buser                                                  $300
• Walter Saffian                                              $300
• Annabelle Mikkelson                                  $225
• Betsy Arnold                                                 $200
• Clare Judge                                                    $150
• Jane Judge                                                      $150
• Molly Bauer                                                   $110
• Thomas Keapproth                                      $100
• Luke Mantooth                                             $100
• Clara Condon                                                $ 75
• Colette Kramer                                             $ 50
• Dominic Judge                                               $ 50
• Joey Lynch                                                      $ 25
• Greg Bauer                                                     $ 10
• Katie Bauer                                                    $ 10
• Lucia Bingham                                              $ 10

Life Lessons

Today’s swim was truly a great accomplishment for many of these swimmers, particularly some of the younger 6^th and 7^th graders.  Aside from the great work we did on behalf of Cystic Fibrosis, I hope that many of us learned a valuable life lesson – We can always do more than we think we can do.  I recalled a comment by former Seton Captain Meghan O’Malley who reminded me of something the Navy SEALS say:  “When you think you are completely maxed out, you’ve reached 40% of your potential.”

This topic is so important to me that I chose to make it the subject of my Swimming Awards Banquet Speech in 2020: Swimming Awards 2020-Let’s Literally Astound Ourselves

One swimmer that learned that lesson last year was first-year swimmer Jack Gregory (12).  Jack was not just in his first year of swimming with Seton, he was in his first year of swimming competitively ever.  When Jack arrived at the swim-a-thon, he had no idea that he was going to have to swim 200 lengths of the pool – personally!  “I thought our whole team had to complete 200 lengths”, he told me afterwards.  And by “afterwards”, I mean after he had completed 200 lengths of the pool – personally!

In his humility, after he finished, Jack tried to apologize to me for making everyone wait.  I just smiled and said “Jack, I would have stayed until midnight if you were willing to keep trying.  If you didn’t quit on yourself, I certainly wasn’t going to quit on you!”

I was so proud to see Jack come back this year and swim again.  Believe it or not, he completed the swim this year a full half an hour faster than last year!  You are a great example to all of us Jack!

The Big Reason We Swam Today

Let’s not forget the cause for which we all fought on a cold New Year’s Eve – the childhood disease, Cystic Fibrosis.

Former Seton Swim-Dad Robin Given started us off with a heart-felt talk about the impact of the advances in Cystic Fibrosis treatment on his family.  With the help of Sarah Given, here is the long version of what he told us:

Cystic Fibrosis is an inherited disease that affects the lungs and digestive system of about 35,000 children and adults in the United States (70,000 worldwide). A defective gene causes the body to make a dysfunctional chloride channel leading to an abundance of thick sticky mucus accumulating in the body.

This mucus creates a host environment for bacteria leading to serious lung infections, scarring, and progressive loss of lung function. Respiratory failure has always been the biggest threat to people living with Cystic Fibrosis.

However, thick mucus also obstructs the pancreatic duct and prevents the body’s digestive enzymes from reaching the duodenum where they are needed to break down fats, proteins, and carbohydrates for absorption by the body. 

Cystic Fibrosis was discovered and named in 1938 when many children weren’t living to see Kindergarten.  Instead, they were succumbing to an unnamed familial illness. Early treatments were targeted at thinning the sticky mucus and treating lung infections. Children would be tipped side to side and head down and have their chest clapped on for hours a day by parents to loosen the thick mucus.  Still, their longevity was not terribly improved.

30,000 people in the US are affected by Cystic Fibrosis, but this is a relatively low number compared to diseases like diabetes and cancer which affect far more people and therefore command more of the federally distributed research dollars – so CF families were on their own.  In 1955 a group of parents and their friends came together to form the Cystic Fibrosis Foundation and started fundraising for a cure. 

In 1989 Dr. Francis Collins, former head of the NIH, while working on the human genome project, discovered the gene for Cystic Fibrosis on the long arm of chromosome 7.  This led to a deeper understanding and opened a new avenue for treatments.  

Cystic Fibrosis is carried on a recessive gene, meaning both parents must be carriers to pass the illness to their children, and each child has a 1 in 4 chance of being born with CF.  Cystic Fibrosis is widespread across the globe affecting nearly every ethnicity; however, it affects people of Northern European descent most often, with Ireland having more CF patients per capita than any other country, even today.

After the discovery of the CF gene, many new therapies were trialed but ultimately failed or only resulted in modest improvements. Each celebrated, each funded by donations from regular folks, but the longing for a cure remained.

Slowly, over the years since the birth of the Cystic Fibrosis Foundation, the median life expectancy has climbed. From 5 years in the 1950s, to 10 in the 1960s, to 20 in the 1980s, to 30 in the 1990s where it leveled off until 2013 and the advent of a new class of drugs called potentiator/ correctors.  These medications work by creating a plug in the misfolded protein that puts it into the proper configuration for function.

In 2013, this new drug helped approximately 4% of the population who were enjoying incredible results. But the rest waited.  Finally, in 2015, a new and improved potentiator/corrector called Trikafta was made available to 90% of the patients with the most common genetic combination of CF, and the results were tremendous!  Today, on the day of our swim-a-thon, the median life expectancy for people living with CF is 53!  But it’s 53 for people who are 53 now.  For younger people like those in our community, the sky is the limit, and their lives are expected to be rich and long!

This was made possible by donations from people like you, who did this work and gave this incredible gift to your friends.

Here is one incredible story to share from this year in the Cystic Fibrosis community:

A mother who didn’t have CF was carrying a child with CF and started taking Trikafta at 20-weeks of pregnancy when the baby in utero started and showing signs of echogenic bowel.  This meant that the baby was at risk for developing an ileus at birth which would require emergency surgery.  The baby’s bowel cleared, and the child was born with a normal bowel requiring no surgery.  

This is a hopeful time for Cystic Fibrosis, where 94.6% of pregnancies were terminated when CF was discovered, new treatments are now available. 

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.

There is still no cure for Cystic Fibrosis and the new drugs work for about 90% of the CF population, meaning 10% of people with CF are still waiting for a medication that will work for them. Our work is not done. 

At the conclusion of his talk, Mr. Given related to us how, when his daughter was born with Cystic Fibrosis, the doctors told him and his wife Sarah that their daughter likely would not live past the age of 24 years.

After the passage of just a couple of decades, he tearfully told us about how he was recently having a conversation with that same daughter about her need to plan for retirement.  “Planning for retirement is something we all take for granted – unless you had CF.  Now I am having a conversation with my daughter about her 401K.  Thank you!”

And that is why we swam today.

Great Swim-a-thon Performers

Here were the swimmers who performed so well this morning:

• Lionel Martinez (8) 1:02.00
• Elijah Soto (10)-TSMV 1:06.00
• Connor Koehr (11) 1:19.00
• Max Wilson (10) 1:19.00
• Clara Condon (11) 1:11.00
• Stella Paradise (12) 1:11.00
• Dominic Judge (9) 1:15.00
• Patrick Kay (8) 1:15.00
• Philomena Kay (9) 1:16.00
• Thiago Martinez (8) 1:20.00
• Anastasia Garvey (10) 1:21.00
• Michael Zahorchak (9) 1:22.00
• William Sokban (11) 1:23.00
• Daniel Sokban (9) 1:23.00
• Luke Mantooth (12) 1:24.00
• Lauren Kelly (10)-TSMV 1:25.00
• Jack Herwick (8) 1:26.00
• Michael Brox (11) 1:26.00
• Jed Albin (12) 1:26.00
• Haley Fifield (11) 1:27.00
• Lucia Bingham (11) 1:28.00
• Maggie Schroer (8) 1:28.00
• Elodie Brox (11) 1:28.00
• Gigi Hill (10) 1:29.00
• Sophia Halisky (8) 1:32.00
• Liam Halisky (11) 1:33.00
• Claire Kay (6) 1:36.00
• Avila Mantooth (8) 1:38.00
• Mariana Bingham (9) 1:38.00
• Kenneth Nguyen (9) 1:41.00
• Kyleigh Fifield (9) 1:43.00
• Mary Clare Osilka (10) 1:45.00
• Joey Lynch (8) 1:45.00
• Drew Nguyen (11) 1:47.00
• Elizabeth Hurley (8) 1:48.00
• Annabelle Mikkelson (7) 1:48.00
• Noemi Rodriguez (9) 1:55.00
• Madelyn Zadnik (12) 1:57.00
• Cora Kramer (9) 1:58.00
• Clare Judge (7) 1:58.00
• Veronica Bingham (7) 1:59.00
• Julia Maranian (8) 1:59.00
• Penny Kramer (9) 2:00.00
• Maggie Mikkelson (6) 2:00.00
• Luke Fifield (7) 2:01.00
• Caroline Schroer (6) 2:02.00
• Jane Judge (8) 2:03.00
• Evan Wible (7) 2:03.00
• James Nguyen (6) 2:04.00
• Malia Buser (10) 2:08.00
• Joel Bookwalter (7) 2:09.00
• Aidan McCardell (10) 2:14.00
• Walter Saffian (11) 2:15.00
• Gigi Gibaldi (9) 2:18.00
• Lucy Herwick (7) 2:20.00
• Jack Gregory (12) 2:32.00
• James Reynolds (7) 2:35.00
• Colette Kramer (10) 2:38.00
• Rosie DeWolf (7) 2:41.00
• Patrick Judge (9) 2:50.00
• Bella Nguyen (8) 73 Lengths

One last thing: Thank you to so many Seton Swimmers who hung around to the end to cheer for their teammates.  I am very pleased to say that I saw more than I can possibly list here.

Remember the “S” in our GEMS?  Sacrifice – We offer it up, we love all our teammates.  This was a great example of the love of which we speak.

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, but many of us also 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