- VOLUNTEER OF THE MONTH
- YOU DID IT!
- TEAM CCF UPDATE
- AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
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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.
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Matt with his wife, Amy.
Matt visits with friends at the Annual Conference in Salt Lake City.
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Matt Reidy considers himself the luckiest unlucky guy he knows. Unlucky because of his diagnosis of cholangiocarcinoma over 5 ½ years ago, and lucky because he’s married to a wonderful wife, has four children, and is fortunate enough to be retired since his diagnosis to focus on what matters.
Diagnosed at 47 years young, as a healthy person with no previous health issues, was completely devastating. Packing bags and heading to the Mayo Clinic not knowing if he would ever return home was heavy and stressful, as was awaiting the news of every single test to determine if a transplant was even possible. Doctors told him that without transplants people die. His treatment took a turn after meeting specialists, and Matt learned that a liver resection was an option. He opted for the resection surgery, but that was followed by serious complications, and recurrences found at his one year post-op appointment. Months of chemotherapy, was followed by radiation, and neither worked. Genomic testing on his original tumor produced no actionable results, nor any promising treatments in 2013. However, all of that changed in the fall of 2015. After an oncologist read a study about Matt’s tumor and a specific mutation, Matt was soon trying a new drug targeted at that mutation. Within five months of starting the treatment, his cancer marker was completely normal and Matt’s scans were clear.
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Over 180 participants braved the Texas heat on August 10th to be a part of
Michelle's Hot Peeps Beat CC 5K and Fun Run
event to benefit the CCF. It was an incredible success!
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Watch CBS Austin's coverage of the day's events.
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Bonnie Krueger (from left to right), Amie Malatek, Jamie Gilliam and Pat Koenig showing their support. All four were friends of Michelle's, her "peeps," from a fitness class she instructed for years.
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It is an event for families, and all ages to get involved.
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Allyson and Tyson, family of Michelle's, are excited to lead off the Fun Run event.
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We went to Wilmington Flower Market which is an annual festival here in Wilmington, DE. Andy Grammer (American singer/songwriter) was playing that day. We got to meet him preshow. I gave him a bag of cholangio swag. And then right before he played “Don’t Give Up on Me,“ he dedicated the song to me, told the crowd I had cancer and had the audience say “Don’t give up Jan." It was so beautiful. The young kids beside us were in tears, the reporter in front of us was crying, and came up and hugged us. We were in tears too. Andy was in tears. It was just such a beautiful expression of kindness by Andy. - Janice Meyer
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Dean Meyer, Janice's husband, and Janice give Andy Grammer the CCF swag.
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For the month of July CCF's volunteers reported over
497 hours
worked! Thank you for a tremendous month of service!
If you have been out spreading awareness, please share your stories. We would love to hear from you. Send articles, information and photos to
cindy.thomas@cholangiocarcinoma.org
.
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On Saturday, August 25, TeamCCF member, Kevin Coyle, hosted the first
event
"
A Hike for Jill. A Hike for a Cure."
event. Kevin and friends hiked to the summit of Mount Washington in honor of his wife, Jill and raised $2,720 for the Foundation.
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Kevin Coyle hikes near Mount Washington's summit.
Kevin and friends along the trail.
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Upcoming events for TeamCCF in September will include the Sully Shuffle 5k run/walk in Oak Lawn, IL with team member Norene Drogosz and the Chicago Half Marathon/5k with team members Kirstin Erni, Kara Noble, Alma Scanlon, and Kaylee Binkley. Combined, these two teams have raised over $8,500!
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Team CCF is looking to recruit runners for our upcoming Fall races.
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Discussion Board Moderators
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Discussion Board Moderators facilitate discussions where users may exchange information, opinions, thoughts or theories in an atmosphere of mutual respect.
Key Responsibilities:
- Welcomes new patients and caregivers to the discussion board community;
- Promotes awareness and education;
- Communicates to users the current status of treatments and research in the field of cholangiocarcinoma; and
- Exercises care to recommend that medical questions be directed to experienced medical providers (moderators do not themselves provide medical advice).
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Susan Braden will perform her one-woman show "Because I Can, Sir" at Ardmore Baptist Church in Winston-Salem, NC on Sunday, September 15th at 3 pm. The event is free and open to the public. A love offering will be received.
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September 21, 2019
Covington, LA
Patient volunteer, Heidi Rhea, has created this family fun event, which includes activities for adults and children, German food and a Beer Garden, live German music, dancing, contests, a raffle, and more!
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October 1st is #RareCancerDay
Rare cancer research can potentially
advance the science for cures for more common cancers, yet research remains vastly underfunded. Let’s change that!
Follow the hashtag #RareCancerDay now through Oct 1st to see how you can help make a difference.
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