Written by CC Cunningham, blog writer and Program Coordinator for the Chris Klug Foundation.
All we can say is…WOW! What a fantastic weekend the Chris Klug Foundation just had in the Big Apple.
Chris Klug and CKF Program Coordinator, CC Cunningham, headed to New York City for a whirlwind weekend that started on Friday with a visit to Mount Sinai Hospital as part of our Patient Ambassador Tour, sponsored by Astellas. Chris and CC were accompanied by CKF Patient Ambassador, heart transplant recipient, and organ donation advocate, Lauren Shields, and her mother, Jeanne. Lauren received her heart transplant in 2009. Once fully recovered, she quickly got to work on changing the law in New York so that it would become mandatory to answer “Yes” or “No” on the organ donor registration question at the Department of Motor Vehicles when registering for one’s driver’s license. Previously, the question could be skipped over completely. Lauren worked with State Senator David Carlucci to have this legislation passed (called “Lauren’s Law,” after Lauren herself) in the state of New York. In 2012, her hard work culminated in the adoption of Lauren’s Law. It was permanently instated in 2017. When Lauren began campaigning for this change in legislation, New York had the lowest number of registered organ donors in the United States. Lauren’s Law is responsible for an increase in organ donors across the state over the last five years, with New York being bumped up to third lowest in the country for organ donor registration.
Our visit at Mount Sinai’s Recanati/Miller Transplantation Institute (RMTI) was very special, as Chris and Lauren shared their stories with patients who were in recovery at the hospital after recently receiving their transplants. “It means a lot to me—to see others who have gone through what I’m currently going through, to see the way you both have recovered,” commented one liver recipient we sat down with. He had received a piece of his (living) daughter’s liver four days earlier. “I’m not looking at life the same way I used to right now. It gives me hope to see people doing so well who were once in my situation.”
Following the inpatient visits, Chris and Lauren spoke to a room of outpatient post-liver transplant recipients, their families/caregivers, and Mount Sinai hospital staff to swap transplant stories, answer questions, and give inspiration for life after transplant. It was a wonderful day and we had so much fun seeing old faces from our visit to Mount Sinai last year.
On Saturday, our TCS NYC Marathon charity team came together for the first time as a team at the Marathon Expo, held in Manhattan at the Javits Center. Aspenites Bryan Gieszl, David de L’Arbre, Virginia Edelson, Chris Lundgren, Justin Todd, and Charlie Singer met up with our out-of-towners Anthony Bronzo (New York, NY), Thaddeus Haas (Denver, CO), and liver transplant recipient Maksim Koloskov (Houston, TX) met up at the Expo. The nervous energy was palpable the day before the race as the runners swapped training stories and talked Marathon prep. All nine team members attended the Expo to pick up their official racing bibs, complimentary CKF T-shirts, and Marathon swag before taking a team photo.
And just like that, it was Marathon Sunday! The runners woke up at the crack of dawn (5 AM) to board ferries and buses to the Start Line on Staten Island. Each runner was placed in a different wave, with the exception of Virginia Edelson and her brother-in-law, Thaddeus Haas, who adjusted their wave times so they could run together. At 9:50 AM, our first team member (Bryan) was off and running. One by one, the racers began the incredible 26.2-mile feat of running across the five boroughs of New York City. We were there to cheer them on as they made landfall in Manhattan, after crossing the Queensborough Bridge. We were also able to catch them on their last mile, as they ran along the lower edge of Central Park before reaching the finish line. It was such a treat to watch our friends and teammates run by as thousands of people joined us in cheering them on from the sidelines. There were over 2 million spectators and 50,000 runners in total—and you could definitely tell. The cheers were neverending and the overall atmosphere was abuzz for the entirety of the race. It was positively overwhelming and incredibly inspiring for the runners and spectators alike. What an amazing experience! All nine of our runners finished in excellent time and we are so proud of their accomplishments in the name of organ donation awareness.
On Monday morning, two of our (very sore) Marathon runners (Charlie and Maksim) joined Chris, CC, Lauren, Jeanne, and Lauren’s uncle, Mike, on their visit to NYU Langone Health’s brand new hospital and transplant unit. It was absolutely gorgeous with stunning 360° views of Manhattan and the East River. After a tour of the transplant floor, we talked with inpatient post-transplant recipients who were early on in their recovery. It was an extremely inspirational morning and we had such a great time.
A very special thanks to our nine Marathon runners for dedicating so much time and effort into training, fundraising, and participating in the NYC Marathon this year. It was the biggest team we’ve had in years and we raised so much in donations to help continue our goal of spreading inspiration and organ donation awareness. These donations make programs like our Patient Ambassador Tour possible. Thank you as well to everyone who generously donated to these runners and supported the cause. We appreciate your contributions more than you know! Huge thank-yous to Mount Sinai Hospital and NYU Langone Health for hosting our visits and to Astellas for sponsoring our Patient Ambassador Program. We cannot wait to return to NYC next year for the 2019 TCS NYC Marathon!