Chris Klug: Ride of His Life

After years of training as a professional snowboarder and exteme sport athlete headed for the Olympics, Chris Klug developed Primary Sclerosing Cholangitits.   The clocked ticked for six years while he waited for a liver transplant until July 28th of 2000.  His sport and his drive then took on a new purpose when life gave him a second chance.  In 2004, Chris founded the Chris Klug Foundation for Organ Donor Awareness.

E-Advocate Network: When you received your Olympic gold medal you became a champion to athletes around the world. Now you help save lives as well. What was you inspiration?

Chris Klug: I’ll never forget my six years on a transplant waiting list, hoping and praying for a second chance. My life was put on hold and I did not know what lay ahead. 100,000 people across the US are currently waiting for solid organ transplants, sadly seventeen die daily waiting. Chris Klug Foundation’s goal is to “Eliminate the wait.”

In a fun way we’re hosting events across the country to educate everyone about the importance of organ and tissue donation. I always loved snowboarding. Through snowboarding I’ve been provided a tremendous platform to help make a difference to those waiting for a second chance. Every chance I get, I wave the banner of organ donation. I hope to compete in my third Winter Olympics in 2010 and help represent the transplant community and encourage everyone to register as an organ donor and provide hope to those going through the transplant process.

E-Advocate Network: Was there a key point after your surgery that you remember knowing you were going to rise to such incredible athletic heights?

Chris Klug: As soon as I awoke from my six hour liver transplant surgery I felt like a new engine got dropped in me. I knew I was going to make it back. Ironically the competitive snowboarding season following my transplant was one of my best. I was on the World Cup podium four times and won a National Championship. I attribute this to the fact that I was racing for my life just a few months before and now I was racing my snowboard again. It truly put things into perspective for me and made me realize how fortunate I was to have received a second chance to do what I love.

E-Advocate Network: What are the primary goals of the Chris Klug foundation and how did your personal experience shape those goals?

Chris Klug: Sharing the life-saving message of organ and tissue donation with everyone. Through our Donor Dudes events on every high school and college campus across the country, CKF hopes to educate young people about the importance of sharing their donation decision with their family.

E-Advocate: Signing up to be a donor can impact the lives of many. How can someone help spread this message through your foundation and sign up?

Chris Klug: Get involved, team up with CKF and host a Donor Dudes event at your workplace or on your campus. Share the message with your friends and family. Together let’s eliminate the wait.

E-Advocate Network: Your key event is the Summit for Life. How does this event further your personal message?

Summit for Life Logo

Chris Klug: First, the Summit for Life is an awareness and educational event. Secondly it is the primary fund raiser for CKF, so we can continue our organ donation outreach through our Donor Dudes events.

E-Advocate Network: When someone becomes a racer or sponsors a racer, how does this impact the lives of those in need of a transplant?

Chris Klug: Sponsoring a racer is an opportunity to share the message of organ donation. The funds raised from S4L racer pledges help CKF continue our important donor education outreach. CKF will host twenty-five donor awareness events in 2008 promoting donation at events such as the Winter X Games, Vans Warped Tour, FIS Snowboard World Cup and high school and college campuses across the country. We hope to double the number of Donor Dudes events in 2009.

Summit for Life, Aspen, Colorado.

The Summit for Life is an annual event with over 500 climbers making their way up Aspen Mountain at night.  They climb 3,267 vertical feet, in the dark and through fairly treacherous  terrain.  The following pictures are from the mountain top finish line during my visit to Summit for Life in 2009.  It was one of the most inspiring charity events I have attended in Colorado. All abilities were welcomed, championed and celebrated.

Summit for Life finishline 1

Summit for Life finishline 3

Summit For Life Finishline2

Visit the Chris Klug Foundation and learn more about donor awareness.

1/7/2012 – updated to reflect pictures from the event.


Gavin Griffin: Pink Hair

In this post, professional poker player Gavin Griffin and the nonprofit Realities for Children discuss how poker tournaments can be a platform for philanthropy. Gavin Griffin is a professional poker player and philanthropist who dies his hair pink for breast cancer awareness at professional poker tournaments. Realities for Children runs a long standing poker tournament to raise funds for children affected by abuse.

E-Advocate Network: By dying your hair pink for the events, did you expect the cancer awareness it would create?

Gavin: I expected to create some awareness, but winning the tournament and everything that followed it was a huge boost. I was on the cover of CardPlayer, the biggest magazine in poker, and a couple of other magazines as well. Every interview I’ve done since then has had some mention of the Avon Foundation or breast cancer awareness. It’s been really great to be a part of raising awareness for breast cancer.

E-Advocate Network: Why is breast cancer awareness close to your heart?

Gavin: In 2004, my girlfriend, Kristen, was diagnosed with breast cancer. She survived and is living a happy and healthy life now. If she hadn’t caught her cancer so early, I never would have met her and my life would be much different.

E-Advocate Network: “How do you plan on creating cancer awareness in the future?”

Gavin: In the future, both Kristen and I plan to continue being advocates for breast cancer awareness by donating to charity, speaking about it in interviews, and perhaps in the future by hosting charity events.

Gavin died his hair pink while he won the Triple Crown, which is a first place win at the World Series of Poker, the World Poker Tour, and the European Poker Tour. These are the three largest poker tournaments in the world. The “hole-cam” allows viewers to see hidden cards live on television, and helps to bring a large television audience to these events.  By having pink hair on the cover of Cardplayer he also spread breast cancer awareness to an additional 100,000 readers.

Realities for Children is a nonprofit in Colorado which holds poker tournaments as its primary fundraiser for its Triumph Award Scholarship Program.

Realities for Children to Gavin: Poker and charities seem to go together. Do you view the poker community as charitable and where do you see the future between the two going?

Gavin Griffin: I don’t think that as a whole the poker community is charitable. Mostly this is because of the nature of our profession. I think that is presented with a cause directly they will give money to it, but most won’t give time or effort to promote a charity. There are obvious exceptions such as Jennifer Harman, Daniel Negreanu, and Phil Gordon. I would like to see more poker players take up causes and get involved with charities. I’m not sure how we will accomplish this, but I look forward to a time when more poker players are aware of the problems outside their own world and do something about them.

E-Advocate Network to Realities for Children: With this in mind, what was the most successful aspect of your event to help abused and neglected children?

Realities for children: It was fun. The event was not for professional players. It let us reach out to a new donor base that we would not know otherwise. We met new supporters because of the social nature of the event, and these relationships could be cultivated from there.

E-Advocate Network to Realities for Children: How did you first create your event?

Realities for Children: The time spent to create a charity poker tournament event is important. Historically, a non-profit could create a poker tournament and take a percentage of the profits. The challenge now is to create an event that is not considered illegal gambling. To be considered a gambling event you must remove one of three aspects: chance, reward, or cost. We removed cost by making the donation optional. We had to work with the gaming department and the sheriff’s office to ensure that the event was correct. Now we have a format.

E-Advocate Network to Realities for Children: Did the format effect the success of the event?

Realities for Children: No. What we did to ensure the event’s success was to create a high end event at the Hyatt hotel with a higher entry donation. We brought in sponsors for the event for added donations. Another aspect that we added was a “blind-a-thon” in which entrants would get pledges for each blind level that they get to.

E-Advocate Network to Realities for Children: What cause does your poker tournament support?

Realities for children: The poker tournament helps abused and neglected children as they grow into adulthood. The event was created to fund our Triumph Award Scholarship for young adults. It is the crown jewel of our program and it is designed to break the cycle of abuse. Children in our program reach personal goals and then receive collegiate support that acknowledges their accomplishments. They also receive a mentor who acts as a role model through young adulthood. The children who we work with are amazing youth who deserve support into their adulthood.

Visit the Realities for Children Website

Erica Sandoval: Inspired by Unity

Unity, the 7 year old daughter of Erica Sandoval, was the inspiration for her non-profit Exceptionally Excited Kids. Erica is an on-line champion who recruited over 5,000 people to send emails to congress in support of autism legislation. Her daughter is a champion as well, overcoming the obstacles that autism creates.

E-Advocate Network: How do you juggle being a the head of a nonprofit, an autism activist and navigating the healthcare system for your daughter?

Erica: My inspiration comes from my 7 year old daughter Unity, who was diagnosed with autism when she was 2 years old. Her diagnosis was extremely hard for me at first. What I knew about autism was what I saw in movies like “Rain Man” and I thought there is no way my daughter has that! After the acceptance kicked in, I became obsessed with learning everything I could about autism and searched everywhere for programs and support for myself and Unity.

There was virtually no activities classes or support groups except for the occasional meeting at her school. Unity’s previous school was an incredible support for me and I served on their board for almost three years so I could give something back to them. Later, after still struggling to find appropriate resources for us, I started a nonprofit organization with my friend Sue, who also has a child with a disability. We offer exactly what I needed when Unity was first diagnosed, and still need today, which is various means of support including exercise, socializing, family support and more.

E-Advocate Network: What were the challenges and highlights of starting your own non-profit?

Erica: There are many of both. The biggest challenge is funding. We are waiting for our 501(c)3 to come in and once we get that a lot more doors will open. It is in the government’s hands… As of now, we rent a room in a local gym, but they only give us 2 hours a week. That is nowhere near enough! We desperately need our own building.

There is such a need for the services we provide; there are over 3,000 children in my town of Hemet alone that qualify for special education, and 2 hours a week will not do! We have been working like crazy giving presentations in and around our community and we have a few coming up that could really be promising. Otherwise, we are stuck waiting for our nonprofit status that will allow us to receive federal grants and such.

One of our board members actually spoke with Mary Bono and she has agreed to speak with the IRS on our behalf to help move along our application! Isn’t that amazing?! In the mean time, practicing giving presentations about EEK is great. Especially for me because I have an enormous fear of speaking in public. Everyone in EEK teases me that I am starting to “come out of my shell!” Which is our phrase to represent a turtle coming out of a shell. The turtle is our logo.

Finally, the benefits are tremendous. I don’t even know how to put them into words without crying. My whole view on the world and other people has changed so drastically. All I can say is that this is exactly what I am supposed to be doing with my life, and I will continue to do this work for the rest of my life. EEK is my family forever.

E-Advocate Network: Your daughter inspired the founding of EEK. How has EEK changed her life as well as others?

Erica: EEK has changed Unity’s life in many ways. She is much more open and seeks out friendships whereas she wouldn’t before. She has learned a lot about being patient and waiting her turn to participate. My other daughter Eden, (who is 4) also has had a lot of benefit from EEK. At first I was worried about the questions she might ask me about the other kids; such as “why does he look like that” or “why does she talk that way?” It’s amazing because she has never once asked me anything like that.

I realized she only sees the person. She does not see anything “wrong.” She accepts people as people. That is the greatest gift! I have heard lots of other children ask those questions before, about Unity even, and it’s only natural… but Eden doesn’t see the differences, she only sees that we are all the same.