- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS
- SCIENTIFIC UPDATE
- TEAMCCF UPDATE
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- 15th ANNIVERSARY HAPPENINGS
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- UPCOMING EVENTS
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Each month, we recognize those whose contributions inspire us and who demonstrate excellence with their service to others. We thank those outstanding individuals and honor their immense efforts, time, and resources that are generously given to the Foundation. |
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Caitlin spreads awareness on World Cholangiocarcinoma Day. |
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Caitlin Brammer enjoys reading, is an art enthusiast, and loves spending time with her large and beloved extended family. She also has a passion for research, helping and connecting with patients (especially children), hence her current professional role as a Clinical Research Professional in pediatric pulmonary, and is a self-described medical nerd with plans of medical school in her future.
Caitlin began volunteering in June of 2020. She admits that initially, she was apprehensive about getting involved with a virtual volunteer position because she had never done anything like that before. However, the pandemic created time for her to explore the opportunities and she shares how glad she is that she made the decision to get involved. Learning about research advocacy work and the Wellness For Life program got her immediately excited about how she could contribute.
Caitlin was devastated by her mother’s passing due to cholangiocarcinoma in February of 2015. As an only child she found herself feeling extremely anxious and depressed. The art she used to love creating was just too difficult to begin, as she associated her love of art with her mom. Caitlin’s mom had really fostered her love of the arts. Art became too painful because it reminded Caitlin of her loss. Shortly after Caitlin became an official volunteer she was introduced to the CARE Team volunteers. Together the group took on the new Wellness For Life program, which included weekly live Zoom/Facebook events - one of those in particular was an art therapy session presented by Caitlin. Before volunteering, Caitlin’s artwork was put on hold and she was missing the joy art had previously brought her. Yet she eventually reconnected to the joy of art while creating coloring pages for attendees to enjoy during the CCF annual conference. Caitlin adds, “it’s remarkable how healing volunteering can be!” Notably, Caitlin has gone on to fully illustrate a children’s Christmas book, soon to be published, since the onset of her volunteer work.
Caitlin has helped with several volunteer projects including the Thank-A-Thon, annual conference volunteer and moderator, research advocacy, and Wellness For Life. While she wishes she could have discovered several CCF programs while her mother was alive, she is grateful for the happiness that volunteering has brought back into her life and is excited to offer her support to others who may be going through similar difficulties that she once experienced. It is a great honor and privilege to recognize Caitlin Brammer as the Volunteer of the Month.
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An incredible 5,409 hours were given by 91 volunteers for the fiscal year of 2020-2021, with 13 individual volunteers exceeding more than 100 hours of service.
Thank you to the beloved volunteers! Their dedication is essential to the work. Their efforts are truly an inspiration to the entire community and are the drive that makes the change for a better tomorrow a reality.
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Katherine Byrnes and Billy Tsafos
NY Yankee Stadium Event
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Thank you, Vassilios "Billy" Tsafos and Kathy Byrnes, for organizing an evening at Yankee Stadium on July 17 to raise funds for Cholangiocaricnoma Foundation.
Friends, family, and other Warriors gathered to cheer the Yankees on against the Boston Red Sox. A highlight of the evening was a visit to the suite by Yankee greats, Mickey Rivers and Bucky Dent. The duo signed a Yankees Jersey which was donated to CCF. It will be included in the CCF Bidding for a Cure virtual auction taking place Sept. 24 – Oct. 2, 2021.
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Moving for the Cure Highlights |
TeamCCF sponsored its 2nd Annual Moving for the Cure, July 18 – 24. Families and individuals accepted the challenge to raise at least $200 and perform any physical movement during that week in July.
In the end, the Moving for the Cure participants and sponsors raised more than $96,000! The turnout was amazing! The event had more than 550 participants from 30 states and 12 countries.
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Becky Stapleton registered her team, Steve Wilger #L18STRONG, in honor of her dad, Steve, who is battling cholangiocarcinoma. Steve is a retired Cincinnati police lieutenant. His badge number was L-18. The blue family is a huge part of their lives and amazing supporters. Their team won the top team fundraiser with an incredible $18,991.35 raised!
Becky said, “In a time where I can't control what is happening to {my Dad}, I was at least able to put my mind and efforts behind something that I could control.” After a week of daily Peloton classes, and encouraging others to do daily activities, Becky and 300 friends and family gathered Saturday morning for their walk. Steve proudly led the walk with bagpipes, family, and friends next to him.
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Heeling Wong and her siblings of Kuala Lumpur, Malaysia, joined Moving for the Cure for the second year in a row with their team, Team Rising Phoenix. The team focused on promoting awareness this year more than fundraising. While still raising more than $700, the siblings organized 91 friends from 12 countries to move at least 10,000 steps each day over the one-week period. Each member posted photos or videos of their movement on social media and their total number of steps. In all, Team Rising Phoenix walked, hiked, ran, biked, or danced a total of 4,040,323 steps! That is a total of 500 miles!
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2021 Moving for the Cure Recap Video |
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Journey of Hope by the Numbers |
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September Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
Sept - TBD
Sept - TBD
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Note: This is a great resource for CholangioConnect Mentors to share with either the newly diagnosed or any new mentees. |
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SCIENTIFIC AND ADVOCACY UPDATES |
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Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer
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Recently, a group of ICRN experts published an article to evaluate the impact of using combined Pertuzumab and Trastuzumab therapy for metastatic biliary tract cancer patients with HER2 gene amplification and/or overexpression enrolled in MyPathway clinical trial NCT02091141.
In this clinical trial, 39 biliary tract cancer patients were enrolled and treated with intravenous Pertuzumab (840 mg loading dose, then 420 mg
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every three weeks) plus Trastuzumab (8 mg/kg loading dose, then 6 mg/kg every three weeks).
The study results showed:
- 9 (23%) patients achieved a partial tumor response defined as more than 30% tumor size reduction.
- 18 (46%) patients had Grade 3–4 treatment-emergent adverse events defined as any adverse events that happened or worsened after initiation of treatment. Still, it may or may not be caused by the treatment itself. These included 10 patients with elevated liver enzymes.
- 3 (8%) patients had grade 3 treatment-related adverse events, which are defined as adverse events confirmed by the treating physician that the used drug causes it. This included increased liver enzymes and bilirubin levels.
- No treatment-related serious adverse events, treatment-related grade 4 events, or deaths.
The authors concluded that this combination therapy is well tolerable, and the response rate is promising.
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Philadelphia Marathon Opens |
TeamCCF is recruiting for the Philadelphia Marathon, Half Marathon, and 8k, Sunday, November 21st. Participants will receive a free bib.
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15TH ANNIVERSARY HAPPENINGS |
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In commemorating CCF's 15th anniversary, CCF pauses to reflect on its beginnings, celebrates the growth, and focuses on the need to create improved research in finding a cure. CCF recently introduced year-long activities and goals in honor of its anniversary. In 2021, CCF will work to fundraise an additional $150,000, specifically for research. You are invited to join us by texting CCFturns15 to 41444. CCF has big goals for 2021, together we know it is possible!
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SAVE THE DATES
September 24th - October 2nd
Need a vacation? Love to holiday shop? Like Christmas ornaments? Mark your calendar, as the CCF Bidding for the Cure event is right around the corner. Trips to a beautiful Virginia scenic byway and a relaxing vacation along a Florida beach are available along with, NBA tickets, exquisite jewelry, and hand-curated baskets. There is something for everyone. Every dollar raised goes straight to fund research for finding a cure.
Registration opens on September 13th. Look for more information on the website.
Join the Facebook Event on September 24th at 3 pm ET to kick off the start of the auction. |
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Coming soon in September to the Awareness Store is the TeamCCF running hat. It is a lightweight Adidas hat with an adjustable strap and a built-in moisture-wicking headband for $22.
Adjustable ear-loop face masks are still in stock.
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Administrative Website Support |
CCF Staff is seeking administrative volunteers to review and proof website pages and updates. This assignment is a remote task that requires approximately 2-4 hours per month. Email cindy@cholangiocarcinoma.org to volunteer today. |
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Light It Green For CCA Volunteers |
CCF Staff is seeking state/country captain volunteers to support the Light It Green For CCA campaign in February of 2022. Seeking participation from all 50 states. Visit our website here to learn more about this project or email cindy@cholangiocarcinoma.org to get involved. |
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Annual Conference T-shirt Designers |
The 2022 Annual Conference t-shirt logo contest is here! CCF is now accepting logo designs for the conference t-shirts.
In support of CCF's mission to find a cure for cholangiocarcinoma, CCF encourages participants to incorporate the concept of hope into their designs.
This year's logo must include a glow-in-the-dark element as the conference now coincides with the Light It Green For CCA in February. The winning logo is to be printed on the front of a black, short-sleeved t-shirt.
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Hike for Jill, Hike for a Cure |
Good luck to Kevin Coyle who will be leading a hike to the summit of Mt. Adams, the second-highest peak in New Hampshire's beautiful White Mountains. The hike is Saturday, September 4th. |
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Volunteer Zoom Meeting
September 21st
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Join us at 7:00 pm ET as we discuss several of the latest volunteer opportunities. All volunteers are welcome.
Register here for the Zoom link to participate. |
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