• Volunteer of the Month
  • You did it!
  • Team CCF Update
  • Awareness Store Sale
  • Volunteers Needed
  • Call for Videos
  • Call for Photos
Volunteer of the Month
Each month we will recognize those whose contributions inspire us and who demonstrate excellence in their service to others. This award was created to thank those outstanding individuals and to bring to light the immense efforts, time and resources that are generously given to the Foundation.
Tom Leitzke
Tom is a patient mentor with CholangioConnect who enjoys traveling, spending time with his wife, appreciating nature, and drumming for a local jazz band. He also loves people, especially those he mentors in the CholangioConnect program. He feels he is the one that has benefited because of the lifelong friendships that have grown from volunteering.
Tom Leitzke considers himself “rewired,” not retired. After being diagnosed with cholangiocarcinoma at 58, his life took an unexpected turn. At his initial diagnosis he was told he would never return to work and that he could expect to live less than two years. Looking back as a patient he remembers feeling his options were to “qualify for surgery, or you didn’t qualify - and the surgery simply meant the surgeons were buying you some time” as there was nothing beyond chemo as far as treatment options. Tom went through surgery and the healing process, but did so completely alone. Tom was void of knowing anyone else with the disease during his surgery, treatments, and recovery. One of his doctors had told him that he had never known of a patient surviving for more than two years. He eventually discovered the Foundation through social media and continues to be active on the FB Warriors page. He also returned to work nearly two and a half years after his diagnosis, and worked in Global Operations until age 65.

Tom attended his first annual conference in 2017, and spoke on the patient perspective. He felt overwhelmed at attending for the first time and appreciated that patients did not have to feel alone, like he had - that the Foundation helped bring people together. Tom feels the most rewarding part of volunteering is that he can offer hope! Tom wishes to offer others hope by encouraging second opinions, listening and building friendships. He simply wants to be there for others so they won’t have to feel alone!

Tom wishes that people knew that there has been progress in the disease. There is new science, since his diagnosis and even in the last five years, and an exponential increase in research. Tom shares, “there is bound to be a big break through in this disease as genomic profiling research is expanding. This research will be a catalyst for life saving treatments. There is hope in the future.” It is a great honor and privilege to recognize Tom Leitzke as the Volunteer of the Month.

You did it!
Paige Rew shares her warrior message on Fox News in New York City.
The Rew family spreading awareness on Fox News.
James, Elizabeth, Paige and Fred Rew with Fox News sharing awareness in New York City on April 1, 2019.
Afternoon Tea Fundraiser hosted by The Brits of Woodlake ( Sally Hennel Crocker , Kate Williams, Nicola Dulaveris, & Sonya White). A beautiful event to help fundraise and spread awareness of cholangiocarcinoma (bile duct cancer). The event raised over $16,000 for the Cholangiocarcinoma Foundation in honor of  Paige Re w.
Team CCF Update
Meet some members of Team CCF
Sharon Keane, running The Bank of America Chicago Marathon 2019

Sharon will be running the Chicago Marathon in memory of her late husband Arty. Arty passed away in 2011 at 48 years old after a long 2 year battle. She has wanted to do something in his memory for quite some time, and has always wanted to run a marathon; so, she combined the two and will be running the Chicago Marathon in October in his honor.  Sharon lives on Cape Cod, has 2 wonderful sons, Conor (26) and Kyle (23) and has been happily re-married to her husband Dan since 2015. Sharon recently turned 50 and is on a mission to be adventurous. She is looking forward to this upcoming marathon challenge! Sharon has raised over $2,700 so far.
Libby Sharkey, running the Cleveland Half Marathon

Libby Sharkey of Chagrin Falls, Ohio will be running the Cleveland Half Marathon in honor of her mother who died in 2014 after a 3 year battle. Libby slowly became a runner during college. Her walks turned into runs. In 2009, Libby ran her first half marathon! Before each race and after each race, Libby's mom would call her. Always her biggest supporter, Libby will run in her honor on May 19th. Libby has raised over $600 so far!
Awareness Store Sale
Remember Mom
this Mother's Day!
May 6th-8th
20% off entire purchase
Use code: MAYSALE19
New necklace just in time for Mother's Day
Volunteers Needed
The Foundation is currently seeking contributors to the Cholangiocarcinoma Foundation's blog called 'cholangio what?' Bloggers would write, edit, post and promote the content of the Foundation's blog. Blogggers would also generate, research and pitch ideas for future posts. If interested, please email cindy.thomas@cholangiocarcinoma.org .
Call for videos

The Foundation has a need for video submissions. If you would like to share your story about any of the questions below, we would love to hear from you!
  • What services does the Cholangiocarcinoma Foundation provide that are important to you? 
  • Why is it important to support funding for this rare cancer?
  • Why is it important for patients to be their own advocates with this type of cancer?
  • Why is it important to do research?
  • What do you want people to know about cholangiocarcinoma?

Submit your video content to cindy.thomas@cholangiocarcinoma.org .

Please submit videos in a horizontal format and keep them brief - 30 seconds in length would be ideal.
Call for photos
If you have had/attended an event, run a race, attended a conference, or fundraised and have photos, feel free to send to cindy.thomas@cholangiocarcinoma.org .
Cholangiocarcinoma Foundation | (888) 936-6731 | info@cholangiocarcinoma.org | cholangiocarcinoma.org