- YOU DID IT!
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEER TRAINING AND NEEDS
- UPCOMING EVENTS
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Rare Cancer Day
A special thanks to those that participated in sharing their cholangiocarcinoma story during last month's Rare Cancer Day and Grateful Patient Day campaigns. Sharing our voice is an extremely important part of raising awareness and sharing critical educational resources for our community.
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Watch Kathy share her story to support Rare Cancer Day.
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Tanya shares her thanks on Grateful Patient Day.
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Grateful Patient Day
I am thankful for Dr. Michael D’Angelica at Memorial Sloan Kettering Cancer Center for removing this beast of a tumor from my liver in March.
I am thankful for him recognizing I needed a portal vein embolization prior to surgery. I am grateful for the skilled hands him and his team used during my surgery and recovery.
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I could not feel more welcomed by a medical team than Dr. Goyal’s team. This, I believe demonstrates Dr. Goyal’s Leadership, the way that her staff represent themselves. From the very first phone call that I had from her Clinical Trial Team, I was just in awe! And I thought to myself, if this is how it’s going to be this is going to be quite the amazing journey! And in fact, that is exactly what has happened! They make me feel as though I am their only patient. An example of what I mean by this are the level of communication is bar none! I have an entire team of people surrounding me which is how they have it set up at MGH. Each of my 3 clinical trial team members have their own roles which makes for excellent, thorough care. And leaves the patient getting answers not being left with not knowing what is going on, which is critical in the mental health of a Cancer patient! - Lisa
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Dr. Lipika Goyal of Massachusettes General Hospital.
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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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George helps spread CCF hope for the Annual Conference 2020.
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George Riddle describes himself as a technical guy who likes to tinker and get into the nitty gritty of technology, engineering, and research. He and his late wife, Elinor, have three children. Although retired for over a decade, he began part time work again in research as friends began a new company. In retirement he and Elinor enjoyed birding, taking drives, and attending university courses together.
Elinor had been a seven year survivor of breast cancer before any unusual liver markers were discovered. Upon further testing, the newly discovered tumor turned out to be cholangiocarcinoma. Within the month, the tumor was resected. A year and a half later liver spots reappeared and oblation and eventually systemic chemotherapy were the treatment courses. George began to read all he could about cholangiocarcinoma. He went from pulling a medical journal publication and not understanding any of the acronyms and medical terminology, to quickly absorbing it all and pulling more and more of them to research and study. On his own he discovered the importance of genomic testing, yet still had to put up quite a fuss to make it happen.
George first learned of the Cholangiocarcinoma Foundation (CCF) after the IDH1 mutation was discovered from Elinor’s Foundation One analysis. George and Elinor discussed attending CCF’s Annual Conference together in 2018, yet she wasn’t up to going. George studied all the presentations from afar. The next year’s conference was different, as Elinor had passed. George found himself asking, “Do I want to do anything with this knowledge?’ Immersed in research, George had taken quite an interest in it. George became a mentor in the CholangioConnect program shortly after attending the 2019 Annual Conference. He is extremely adept at equipping patients and families with research to discuss with their medical teams. George also serves as a Research Advocate and has an incredible understanding of clinical trials. He has attended regional symposiums and has written for the Cholangio..what? Blog. His love of research now benefits cholangiocarcinoma patients, as he is eager to share what he has learned and what he continues to discover. It is a great honor and privilege to recognize George Riddle as the Volunteer of the Month.
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Kevin Coyle at the summit of A Hike for Jill, A Hike for a Cure.
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Congratulations to TeamCCF member, Kevin Coyle, who organized another successful A Hike for Jill, A Hike for a Cure this month. Bad weather forced Coyle to delay the hike for a week. The change in plans did not dampen his spirits though. The hike was absolutely beautiful and well attended. The event raised over $3,500! Coyle and friends participate in the hike every year in memory of Kevin's wife, Jill Coyle.
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Lace up your sneakers and grab a family member or friend!
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TeamCCF is planning a virtual Turkey Trot Run/Bike/Walk for the week of Thanksgiving. Registration will open mid October. Each participant will receive a long sleeved Turkey Trot shirt, bib and a downloadable PDF cookbook with special recipes from the Cholangiocarcinoma Staff. Options to fundraise or sponsor the event will be available. Visit the CCF Facebook page and website for information coming soon.
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Only 2 months away until Christmas!
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VOLUNTEER TRAINING AND NEEDS
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Volunteer Advocacy Call
On September 15, 2020 Melinda Bachini, CCF's Advocacy Director, led a volunteer advocacy meeting to educate volunteers, both old and new, about current advocacy projects and needs. Overviews were shared regarding patient advocacy, research advocacy, CARE Teams, CholangioConnect, the Veterans Program and more. Watch the recorded meeting on our YouTube channel.
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CCF's next Volunteer Meeting is scheduled for November 10th at 5:00 pm MST.
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Thank-A-Thon
Nov. 2nd - Nov. 14th CCF will host a
Thank-A-Thon. We are currently seeking volunteers to make phone calls thanking this year's donors. CCF will be providing a script for the calls and we are asking for volunteers to make approximately 20 calls during the two week time frame. It's a call to strictly share our gratitude with those who are helping us find a cure. Please visit here, if interested in volunteering with this upcoming event, or email [email protected].
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Administrative Volunteer
CCF needs volunteers willing to review various cancer resource links and submit pertinent resources to the IT staff for website publishing.
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Patient & Caregiver Support Group Moderators
CCF is seeking moderators for the monthly onlilne support groups currently held 1st and 3rd Thursdays at 2 pm MST.
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October Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
October 8th - Facebook Live Event with Incyte
October 22nd - PCI Biotech
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Inaugural
Quack Out Cholangio Virtual 5k
to Crush Bile Duct Cancer
October 1-30, 2020
Anywhere, USA
is now virtual !
Run a virtual 5K from anywhere! See the website for more details. A silent auction is now included in the event, which you can find here. On Sat., Oct. 31, 2020 & Sun., Nov. 1 from 12 - 2pm various items will be available for purchase at Frank's Wine in Wilmington, DE including nice bottles of wine at a discounted prices compliments of Frank's Wine.
Come dressed as a duck and be entered into a draw! Social distance rules will be in place and we kindly ask you wear a mask, stay home if unwell, and socially distance, but we can still have fun staying 6 ducks apart!
Cancer research, as you can imagine, took a huge financial hit during the pandemic so all funds raised will go towards much needed research for Cholangiocarcinoma.
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