- YOU DID IT!
- SHARING THE SCIENCE
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEER TRAINING AND NEEDS
- UPCOMING EVENTS
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Cholangiocarcinoma Foundation Receives a $500,000 Gift, the Largest in its History, from the Scott Family in Memory of Andrea Scott |
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“Andrea was and continues to be, an inspiration to the Foundation, friends, family, patients, and caregivers worldwide, her enthusiasm and passion for this cause continue to give us hope and encourage us to take bold action.”
Stacie Lindsey
CCF Founder & CEO
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“Our family could not think of a more meaningful way to honor Andrea’s memory than by accelerating research for this devastating disease. This gift continues the legacy she began in her lifetime and will help to provide long-term stability to the Foundation.”
Jason Scott
Chair, CCF Board of Directors
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Andrea (Breuhan) Scott became active with the Foundation after her diagnosis of intrahepatic cholangiocarcinoma in April of 2013. She was a stalwart champion and prolific fundraiser for the organization. She created and founded the organization’s Campaign for the CURE, a highly successful annual fundraising drive for the Foundation. Stacie Lindsey shared, “Andrea was and continues to be, an inspiration to the Foundation, friends, family, patients, and caregivers worldwide, her enthusiasm and passion for this cause continue to give us hope and encourage us to take bold action.” |
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In December 424 virtual candles were lit to remember loved ones and honor caregivers, volunteers, and professionals whose lives have been touched by cholangiocarcinoma. Held each December, Candles for the Cure, invites people from around the world to light a candle, post online videos honoring or memorializing someone, and to make a gift to support the work of the Cholangiocarcinoma Foundation. This year, our community contributed nearly $108,000 which was matched with a $25,000 challenge grant for a total of $132,936. Candles were lit in 11 countries and 43 states. Click here to view the tributes.
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JINGLE FOR JANET
The third annual Jingle for Janet was held virtually in 2020 during the week of December 20th. Organizer Eric Parker quickly adapted the in-person 5k to allow runners to participate in the event anywhere in the US during the one week. Eric mailed shirts to all runners and asked participants to post photos to the Jingle for Janet Facebook page. This year, Eric was able to raise over $4,400! The 5k run is held in memory of his late wife Janet, who lost her battle with cholangiocarcinoma in October of 2018.
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GIVING TUESDAY SUCCESS
We reached our #GivingTuesday goal!
Thanks to donors like you, more than $62,000 was raised for the Cholangiocarcinoma Foundation (CCF) during our #GivingTuesday campaign.
Your donations help to fund critical cholangiocarcinoma research and improve the lives of those affected by this deadly disease. We are tremendously grateful for your support!
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Dr. Reham Abdel-Wahab MD, Ph.D., CCF's Director of Research and Chief Scientific Officer, shares three scientific articles, including phase studies and CCA marker investigation, to help patients and families learn of scientific advancements in the treatment of cholangiocarcinoma.
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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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Nirma enjoys time with her family. |
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Nirma resides in New Jersey and is a busy mom of two handsome boys with her amazingly supportive husband. She is currently still adjusting to working remotely as her family balances remote schooling with both boys on hybrid schedules. She has worked for Johnson and Johnson for almost 17 years and enjoys her job in the Pharmaceutical Unit. For hobbies, Nirma enjoys cooking, a talent she learned from her mother and trying new things.
Nirma’s mother fell ill on Christmas Eve of 2016 and generally did not feel well at all during the holidays and through the new year. In early January of 2017, she found herself in the emergency room after jaundice appeared. She was admitted to the hospital and numerous tests were initiated. CT scans showed something on her liver, but at the community hospital level suggestions were made to take her elsewhere. A second hospital, a stent procedure all while trying to get her stable, a transport to a third hospital with weeks passing by, yielded multiple negative biopsies. Unable to operate with a stage four diagnosis, another stent procedure was performed yet kidney failure quickly ensued. Nirma’s mother passed on February 27th, only weeks after experiencing her first symptom.
Nirma knew she had to do something for others fighting cholangiocarcinoma. She was constantly asking herself, “how could we have known nothing about this horrific cancer?” and “how did this happen so fast?” Nirma was raised to give back and make life easier for others. Just a day before her mother’s passing, Nirma’s mom wanted to donate her beautiful long hair, as she was always thinking of others. Nirma knew immediately following her mother’s death that she would grow out her own hair to donate in lieu of her mother. With fundraising on her mind, she eventually found the Cholangiocarcinoma Foundation online in researching ways to give back and it felt right. That summer she and her family planned a 5K race and designed t-shirts. With 30 people supporting their first race, they fundraised $9,102 and were matched in full by Johnson and Johnson’s Matching Gift Program which matches employee gifts 100% up to $10,000. She has gone on to plan three more races, each getting larger and involving more partnerships with community and local vendors supplying coffee and bagels for participants. Nirma has contributed, with support from Johnson and Johnson, over $85,000 in funds for finding a cure. In addition to the numerous hours of event planning, Nirma has also found time to provide CCF with social media content and created videos to support other CCF campaigns, like Candles for the Cure. It is a great honor and privilege to recognize Nirma Patel as Volunteer of the Month.
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The 2021 Bank of America Chicago Marathon has been announced for Sunday, October 10th. TeamCCF is recruiting runners for the 2021 Bank of America Chicago Marathon. If interested in joining the team, please email Meredith.McGuffage@cholangiocarcinoma.org for more information.
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CCF Awareness Store
The Cholangiocarcinoma Foundation is celebrating 15 years in 2021. The awareness store will be adding new pieces such as shirts, magnets, awareness wristbands, and pins to celebrate. Be sure to check out the store for these special items.
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Call for Photos
CCF is seeking photos of cholangiocarcinoma patients with their healthcare team - including physicians, oncologists, surgeons, nurses, technicians, etc.
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Patient & Caregiver Support Group Moderators
CCF is seeking moderators for the monthly online support groups currently held 1st and 3rd Thursdays at 2 pm MST.
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John Bridgewater, MD, Ph.D. of UCL Cancer Institute, London, UK |
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Funda Meric-Bernstam, MD of MD Anderson Cancer Center, Houston, TX |
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SAVE THE DATE
We are pleased to announce that the 8th Annual Cholangiocarcinoma Foundation Conference will be held virtually from March 31st- April 2nd, 2021. John Bridgewater, MD, Ph.D. of the UCL Cancer Institute, London, and Funda Meric-Bernstam, MD of MD Anderson Cancer Center will Co-Chair the event.
Stay tuned, more information will be made available in the coming weeks and months, or sign up for email updates here.
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Volunteer Meeting
January 12, 2021
5:00 pm MST
You are invited to a Zoom meeting where you can learn about ways to get involved with the Cholangiocarcinoma Foundation.
Register in advance for this meeting here.
After registering, you will receive a confirmation email containing information about joining the meeting.
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January Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
January 14th - University of Chicago Liver Transplant Presentation
January 28th - HER2 in Cholangiocarcinoma
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CCF Anniversary Kick-off Webinar
January 21st, 2021
5:00 pm MST
Join CCF as we kick-off the year-long celebrations of our 15th anniversary! We have exciting announcements and prizes to give away. To register for the webinar, click here.
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Light It Green For CC
Coming soon during February 2021
Help us shed some light on cholangiocarcinoma! Using the green light bulb in place of a regular bulb helps create awareness within your community. Take a photo of your green light bulb, in advance, to share with us, in Dropbox, here or tag us on Instagram with #CCFawarenessmonth. Create a video while you demo your green light bulb, and share it with us to promote the campaign.
February is Cholangiocarcinoma Awareness Month. Light your home, your school, your work, your hospital, and more to continue to shed light on cholangiocarcinoma awareness.
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