- NEW FDA APPROVAL
- COVID-19 RESOURCES
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
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FDA Approves Incyte's Pemigatinib for Advanced Cholangiocarcinoma
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On April 17, 2020 Food and Drug Administration (FDA) approved the first targeted therapy for cholangiocarcinoma. The approvals of Incyte’s Pemazyre™ (pemigatinib), a kinase inhibitor indicated for the treatment of adults with previously treated, unresectable locally advanced or metastatic cholangiocarcinoma, and Foundation Medicine, Inc.’s FoundationOneRCDx as the registrational companion diagnostic for the treatment. These approvals mark a first step in changing the course of this disease, which has seen no change in the standard of care for more than 10 years.
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This milestone in the history of therapy development for cholangiocarcinoma marks the first in what is hoped will be many approvals for the treatment of cholangiocarcinoma.
“Our research into FGFR2 fusions or rearrangements in cholangiocarcinoma and the development of Pemazyre as the first targeted treatment option demonstrates our commitment to translating scientific discovery into solutions that can positively impact patients’ lives,” said Hervé Hoppenot, Chief Executive Officer, Incyte. “We’re proud to bring Pemazyre to patients and will make this new treatment available immediately.”
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Dear Friends in the Cholangiocarcinoma Community,
Each week, we're going to offer five ways you can fight
COVID-19
, overcome the fear of the unknown and deal with the uncertainty of this situation.
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Dr. Geret Giles shares five healthy daily practices to use during the COVID-19 pandemic.
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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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Marsha serves as a patient mentor and a CARE Team lead for CCF.
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Marsha Goldstein has a passion for learning. It’s evident as one learns of her accomplishments - a degree in journalism, a published author, and a nursing degree. Yet that isn’t all of her interests, as she also enjoys working with the sexually abused, music and elementary education. She has worked in radio as a medical reporter, in child psychology as a head nurse, and taught music at her son’s preschool for five years.
When Marsha was initially diagnosed with stage four cholangiocarcinoma (cc) almost five years ago, a fellow patient was there for her - offering support, a listening ear to vent, and providing much-needed resources. In 2015 her local cancer center did not want to even accept her as a patient, and she had a lot of questions.
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NEW!
Moving For a Cure with TeamCCF
The first inaugural virtual athletic fundraiser will be hosted by the Cholangiocarcinoma Foundation and TeamCCF the week of July 5 - July 11. Each participant will receive a race shirt, bib, a finisher's medal, a personal fundraising page, and a chance for prizes and awards. Participants are asked to raise at least $200 by July 11. Details to follow in the next few weeks.
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CCF Emerald Leaf
Gold Bangle Bracelet
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CCF Leaf Trio
Gold Bangle Set
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CCF Peridot Leaf
Silver Necklace
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May 6th-8th
20% off all jewelry
Celebrate mom or a loved one with a gift from the Awareness Store.
Use code
MAYSALE20
for 20% off all jewelry.
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CCF is currently seeking volunteers who are participating in the virtual athletic event on July 5-11, and also willing to share video content of their participation to engage CCF's audience during the week long event.
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Participants do not need to be marathon runners. People of any athletic ability can participate. Email
cindy.thomas@cholangiocarcinoma.org
if you are interested in this volunteer opportunity.
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This year’s campaign will launch May 1st. We look forward to sharing inspiring stories and progress from our diverse community of patients, caregivers, friends and professionals. We are also very excited to thank and recognize our Board of Directors who have stepped up to provide a challenge match for this campaign. Stay tuned for more details on this incredibly generous leadership match.
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How to Host a Personal Fundraiser for the Campaign for the Cure
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Your support changes the lives of cholangiocarcinoma patients! Here is how to start your Facebook fundraiser now to help! This is your opportunity to make a difference.
Ways to get involved:
- Share CCF's content on social media.
- Use and follow the hastag #C4C20.
- Host a personal fundraiser.
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Bi-weekly educational webinars will feature the newest developments and presentations from experts on topics developed from your questions. Two other Fridays each month will be dedicated to forums designed to connect patients and caregivers effected by CCA in a safe, moderated, interactive space.
Support Groups will be held the 1st (Patient) and 3rd (Caregiver) Friday of every month and Educational Webinars will be held on the 2nd and 4th Friday of each month.
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This week we are kicking off our Webinar Series with a
Patient Support Group “Meet and Greet”
and get to know you. This support group will be held via Zoom with live video this
Friday, May 1, 2020
at
5pm (EDT).
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Brawl for a Cause
shares their mission, and Mark invites you to support his event benefiting the CCF on May 2nd.
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Sat, May 2nd, 2020
6:00 PM EDT
Southern Exchange Ballrooms
200 Peachtree St #206, Atlanta, GA
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Thanks to encouragement from my coworkers and family, I have decided to fight this year on May 2nd for a cause near and dear to my heart.
In May of 2018 my Mother was diagnosed with Cholangiocarcinoma, a rare cancer of the bile ducts. We were extremely scared and confused at first, considering the fact that little to no conclusive research has been done regarding this form of cancer. It is terrifying to research an illness affecting the person who gave you life that so little is known about. Only 8,000 people in the United States are diagnosed with Cholangiocarcinoma each year, so it is tough to find guidance and information about the disease. Despite our lack of knowledge, we had a plan as a family to fight against all odds and stick together. We know that where there’s a Will, there’s a way.
Our worries along with a plethora of questions were answered thanks to the Cholangiocarcinoma Foundation.
Because of them, my Mom was connected with the right doctors to help her begin the steps necessary for fighting this disease! A majority of the research done for this cancer is spearheaded by the Cholangiocarcinoma Foundation, and they have been instrumental in providing my Mom with the assistance and care she requires.
Almost two years have passed now, and despite countless ups and downs, my Mom is still fighting just as hard as before. Please help me by giving the Cholangiocarcinoma Foundation and myself your support.
No family should be confused and lost in the face of cancer.
Thank you!
Mark Rew
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"The Quack Out
Cholangio 5k Run/Walk
to Crush Bile Duct Cancer has been rescheduled to Saturday, October 24, 2020, at the Hare Pavilion on the Wilmington Riverwalk in Wilmington, DE. The postponement was disappointing I am sure to you as it was to us, however, we now have even more time to make this event even more incredible.
We have over $1200 in prizes and raffle draws and so much more. Follow us on Facebook on Quack Out for details about the race starting Monday. We can't wait to see you on October 24!!"
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