Founded in 2003 by former professional snowboarder Chris Klug, the Chris Klug Foundation is dedicated to raising awareness about organ and tissue donation, as well as providing support to those impacted by such life-changing situations.
Here, Lauren Pierce, executive director of the Chris Klug Foundation, reveals all about the organization’s objectives and its Bounce Back Award awareness event.
Why did Chris originally establish the Foundation?
Chris is a professional snowboarder who performed in the Olympics three times before being diagnosed with primary sclerosing cholangitis (PSC) – a rare, chronic condition that slowly damages the liver and bile duct where the only known cure is a liver transplant.
Eighteen months after receiving a liver transplant, he competed in the 2002 Winter Olympics, winning a bronze medal – the first time a transplant recipient had competed in either the Winter or Summer Olympics. From there, he dedicated his life to this organization and raising awareness about transplantation.
What are the primary objectives of the Chris Klug Foundation?
Currently, 43.7% of Americans are registered organ donors. CKF’s goal is to raise registration to 75% nationwide, specifically in states like New York that have a particularly low number of registered donors.
We achieve this through a range of different activities. One example is our Donor Dudes initiative which is designed to start discussion around organ and tissue donation in high schools and colleges.
How do you primarily communicate with your members?
Fortunately, with such a small foundation we are able to communicate directly with our members and donors. We send out a monthly newsletter, have a great social media following and we see many members and donors at our outreach events. It is an incredibly supportive community.
How involved are you with other patient advocacy groups and donor registries?
Very involved! We partner with other patient advocacy groups and donor registries across the country to host outreach events. We also share our ‘Toolkit for Teachers’ curriculum with organizations to share our message and help inform people about the benefits of donating.
Why did you launch the Bounce Back Award and what do they recognize?
Our intent is to inspire those touched by transplant and help people realize their life is not over after transplantation. Each year, we formally recognize two recipients who’ve exhibited a great quality of life after transplantation, based on career accomplishment, participation in a sport or hobby or simply leading a fulfilling life with family and loved ones. As you can imagine, it’s never easy to pick a winner!
How do people get involved in the Bounce Back Award?
Anyone can nominate a friend or family member that they believe are living proof that an organ transplant doesn’t stop you from living your life.
Who has won the award in the past?
Past winners include Barbara Breckenridge from Buffalo, New York – a 15-year-old kidney transplant recipient who has dedicated her life to advocating for tissue and organ donation by providing peer counseling to patients on dialysis and their families.
Another winner is liver transplant recipient David Miller from Alabama, who educates high school students about organ and tissue donation. More than 860 people registered as organ donors following his speeches and presentations in 2014 alone – so I can’t imagine what his number is now!
Finally, Edward Drake from Ohio won a Bounce Back Award for his work in founding the patient advocacy organization YNOTT? while waiting for a kidney transplant. He is dedicated to raising awareness of tissue and organ donation, particularly in the African-American community.
What does your partnership with Astellas mean to the Foundation?
The support we get, not only for the event, but all year-round, lets us focus on recognizing transplant recipients who exemplify the same goals and determination that both Astellas and the Chris Klug Foundation believe in.
Our goals cannot be met or exceeded without developing and implementing a broad range of activities. Our mission is direct, but there are many different ways to go about reaching them. It is fun and ever changing.