Written by CC Cunningham, CKF Program Manager.
CKF has returned from our trip to the East Coast this past weekend and it still feels like we’re running on marathon adrenaline and sidewalk vendor hot dogs!
On Friday, we kicked off the exciting weekend by visiting Mount Sinai Hospital as part of our nationwide Patient Ambassador Tour, sponsored by Astellas Pharma. While there, we hosted a panel consisting of three speakers who are closely tied to the transplant community: Dr. Sande Florman, Lauren Shields, and Jay Bernheisel. Our founder, Chris Klug, moderated the panel discussion.
Dr. Florman is a transplant surgeon and Director of the Recanati/Miller Transplantation Institute at Mount Sinai. He has been a friend of the foundation for many years, after being introduced to Chris during a speaking engagement on transplantation in Aspen.
Lauren Shields received a heart transplant in 2009 and, once fully recovered, she quickly got to work on changing the law in the state of 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 six years, with New York being bumped up to third lowest in the country for organ donor registration. This year, she is the recipient of CKF’s coveted Bounce Back Give Back Award and will be honored in December at our annual Summit for Life nighttime uphill race in Aspen. Check out her bio here.
Jay Bernheisel was diagnosed with primary sclerosing cholangitis (PSC)—the same disease that Chris Klug was diagnosed with that led to his transplant—in 2001. Jay lived with the disease for many years after his initial diagnosis, during which time he became a father of two children and finished his Ph. D. in teaching. In 2012, he received a liver transplant and, just seven months later, he trained for and completed the Chicago Marathon. Most recently, Jay was one of ten runners on CKF’s 2019 NYC Marathon team and raised money and awareness towards the cause that has become near and dear to him since his transplant. Read Jay’s full Donor Story here.
Chris, Lauren, and Jay all shared their transplant stories with Mount Sinai medical staff, pre- and post-transplant patients, and their caregivers. Dr. Florman also spoke of his own experiences working within the transplant community and answered questions. “You don’t win an Olympic medal without a great team behind you,” Chris Klug remarked towards the end of the discussion. “Getting a transplant is the same way: you don’t get through a transplant without your team—doctors, nurses, caregivers—behind you.”
On Saturday, we traveled across state lines to help host another panel talk at the headquarters of the New Jersey-based organ procurement organization (OPO), the NJ Sharing Network. Chris moderated this panel as well and we had the opportunity to hear four speakers: Dr. Francis Weng (transplant physician), Patti DiSanto (caregiver), Brianna Edler-Strand (living donor), and Mike Strusiak (transplant recipient).
Dr. Weng is the Associate Chief of the Renal and Pancreas Transplant Division at Saint Barnabas Medical Center in Livingston, NJ. He joined the transplant team at Saint Barnabas in 2005. He has written dozens of articles and speaks nationally on transplant-related topics.
In 2006, Patti Di Santo’s son, Joe, received a heart transplant when he was 12 years old. Since then, Patti has been an avid volunteer and advocate for the NJ Sharing Network. She is also the co-manager of the East Coast-based Transplant Games team, Team Liberty, and works on the Caregivers Council at the NJ Sharing Network, where she helps to create support systems for fellow caregivers.
Brianna Edler-Strand donated her kidney to the former choir director at her church, Marcus Purdie, in September of 2016. When Brianna realized the great need for more organ donors, she never second-guessed donating one of her kidneys to Marcus. She is forever grateful to have played a role in saving someone’s life and she would do it all over again in a heartbeat.
12-year kidney/pancreas transplant recipient, Mike Strusiak, is a volunteer with the NJ Sharing Network, a co-manager of Team Liberty alongside Patti, a proud father of four girls, and grandfather of seven grandchildren. Two years ago, Mike was honored at the Donate Life Float Rose Parade. Since his transplant, he honors his deceased donor, Kristen Theresa O’Hara, every day by living life to the fullest and advocating for organ donation.
It was incredibly special to meet these four individuals and hear their stories. The panel discussion was attended by NJ Sharing Network volunteers who have all been touched by transplant in some way. It was a wonderful morning and we had such a great time meeting new people and seeing old faces from past events and Transplant Games.
After our panel discussion had ended in New Jersey, we headed back over the bridge to the Javits Center in Manhattan to meet our 2019 NYC Marathon charity team for the first time as a whole team at the Marathon Expo. This year, we had two transplant recipients on our team: Jay Bernheisel (Medina, TN) and James Miles (Parma, OH)—both liver transplant recipients. We also had an eye donation bank employee, Matt Webber, on our team, who works for Lions VisionGift in Portland, Oregon. CKF board member and Aspen local, Virginia Edelson, returned for her third year running with our marathon squad. he was joined by another Team CKF veteran and familiar Aspen face, Charlie Singer, who recruited his mother, Karen Singer (Lutherville, MD), to run with him on this year’s team as well. Other Aspenites included Nicole (Coley) Cook and Sara Hagopian-Porter. We were also joined by two New Yorkers this year: Steven McConville and Thomas Hennessy, both from the Big Apple. The nervous energy was palpable the day before the race as the runners swapped training stories and talked Marathon prep. Our 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. At 9:40 AM, our first runner (Thomas) 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. The Klugs were stationed at Central Park North to catch the runners coming by once they entered back into Manhattan from the Bronx. 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 52,000 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 ten of our runners finished in excellent time and we are so proud of their accomplishments in the name of organ donation awareness.
A very special thanks to our ten 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 fundraising and 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 NJ Sharing Network for hosting our visits and to Astellas Pharma as well for sponsoring our Patient Ambassador Program. We’ll see you back in NYC next year for the 2020 TCS NYC Marathon!