- YOU DID IT!
- ADVOCACY UPDATE
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEER TRAINING AND NEEDS
- UPCOMING EVENTS
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CCF celebrates its 15th anniversary this year. You made it possible! |
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Watch CCF celebrates 15 years to learn more about the journey.
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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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In case you missed it, view the Anniversary Kick-off Webinar above. |
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Annual Conference 2021
T-shirt Contest Winner
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Thank you to everyone who submitted designs and voted in the Annual Conference 2021 T-shirt Design Contest! The creativity of the CCF community is incredible.
CCF is excited to announce the winning design submitted by Matt Reidy. Congratulations, Matt!
This white, short-sleeved t-shirt will be available for purchase soon in the CCF Awareness Store.
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“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead
Hi, I’m Dawn Scott, Patient Advocate with Cholangiocarcinoma Foundation (CCF). While 2020 had its challenges, it also had moments to celebrate, such as FDA approval of Pemazyre (also known as Pemagatinib), the first drug solely approved to treat Cholangiocarcinoma (CCA). That moment of triumph could not have happened without intense, persistent, and vocal advocacy efforts from CCF working in unison with the CCA community.
Though there is still much to be done to treat and beat this disease, CCF has big plans for 2021! Here is a brief overview of a few things we are working on, with more to be unveiled as the year progresses!
- Research advocates have been hard at work this month attending GI ASCO and reviewing the many outstanding proposals CCF received for its Fellowship positions. These dedicated advocates also learned more about TargetCancer Foundation’s TRACK Study. This clinical trial—which is currently accruing—will provide free biomarker testing and tumor board review to enrolled patients and seeks the participation of at least 100 CCA patients. You can find more info here or by contacting me or Director of Advocacy, Melinda Bachini.
- After the stress of 2020, CCF and advocates realized how important self-care is for our physical, mental, and emotional health. The result is our brand-new WELLNESS FOR LIFE Program (#CCFW4L) designed to address every aspect of well-being from nutrition, physical movement, mindfulness, the importance of sleep, stress management, and so much more. Please join us on Monday, February 1st, when we host a Kick-Off Event to introduce CCF’s Wellness for Life: Cholangiocarcinoma Community That Fosters A Healthy Mind & Body. Every Wednesday, we will post a live or recorded event focused on improving our overall wellness, and each weekend will share a Self-Care Sunday tip. On February 3rd, our first Wellness Wednesday activity with Stacie Lindsey as she makes her famous CCF Green Smoothie! Keep an eye on your email or CCF’s social media channels for the recipe ingredients needed, and plan to join us in making this healthy smoothie with her!
- The Wellness For Life webpage (coming soon) will also be chock-full of recipes, physical movement ideas, helpful videos, journaling, art therapy, suggested apps, and many more resources. We also have a Facebook page, CCF’s Wellness for Life, to keep the conversation lively and support flowing. So, whether you are a patient, caregiver, clinician, or supporter of the CCF community, you deserve the chance to focus on your well-being, and we are here to support you every step of the way!
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Next month, please join me as I unveil additional advocacy efforts and opportunities to make a difference in 2021. There are many new programs and projects underway at the Foundation, and each brings with it many opportunities to advocate for patients, caregivers, research, education, and awareness.
CCF thanks our amazing advocates for all of your hard work and dedication to eradicating CCA. I also want to extend a warm welcome to join us in working together for a better tomorrow, today.
By Dawn Scott, CCF Patient Advocate
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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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Diana and her family work to spread awareness and fundraise through fitness opportunities and TeamCCF. |
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Diana Park is a middle school English teacher with a passion for living life to the fullest. As a busy mother of three daughters, she gets a lot accomplished in a day because she also serves as a girl’s coach for volleyball, basketball, track, and soccer. Fitness and being physically active are passions of hers.
Diana’s mother was diagnosed with cholangiocarcinoma after a routine colonoscopy made her incredibly sick with an unusual and extremely adverse reaction to the medication. Her mom quickly learned, after numerous additional tests, of a cantaloupe-sized tumor on her liver which was eventually biopsied and surgically removed. After receiving chemotherapy for a year, she began exploring alternative and holistic therapies, yet despite all of the treatments Diana’s mother passed away after a two-year journey.
Diana knew nothing of the Cholangiocarcinoma Foundation (CCF) during her mother’s treatment. Diana’s brother found CCF online, about six months after their mother’s passing, and forwarded Diana an email about it suggesting that she get involved. Diana acknowledges that she began volunteering with TeamCCF to deal with some of the guilt inside. Her mother was in Texas, and at the time Diana lived in New York. Diana was simply not able to be present as a caregiver for the whole of her mother’s cancer treatments. Running with TeamCCF allowed her to be a voice for others, whether for those patients who have passed or for the patients who do not feel good enough or who aren’t able to run a marathon. Diana shares her running, conditioning, and practice time became “my time with her [mom]. Running makes it feel like she’s there.” As Diana would have daily check-in phone calls with her mom every day, Diana feels her time running now is now a way to continue those daily calls as she trains.
Diana first ran the Oklahoma City Memorial Marathon for TeamCCF in 2017. Since then she has run two Chicago Marathons, the Houston Clear Lake 10K, and both of CCF’s new 2020 fitness initiatives - Moving for the Cure in July, and the Turkey Trot in November. Each race begins well before race day as she trains in an 18-week program to prepare. Clean eating is another critical part of her marathon preparations. She is supported by a key group of women who push her to train and she recognizes that their support plays a key role in her efforts. These women all ran in honor of her mother as well. Diana shares she is indebted to them for that act of love and support. Diana also shares that her races mean even more to her now that she runs with a purpose in mind. She eagerly awaits news about participating in the next New York Marathon and is excited that the pandemic has afforded her the opportunity to get into the best shape of her life. She wants to be a voice for awareness and raise funds for research about a disease that we just know too little about. Diana shares that volunteering has helped her keep the memory of her mother alive. As a caregiver who has lost someone, Diana adds “don’t be afraid to talk about it. Let people know of your loss and your love.” Talking through her anger, guilt, and sadness has been a healing process for Diana. She looks forward to Awareness Month, as she has invited all of her fellow teaching co-workers to wear green with her. It is a great honor and a privilege to recognize Diana Park as Volunteer of the Month.
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Actively recruiting for the upcoming Chicago Marathon |
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Kirstin Erni
Team CCF Team Member
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"As I raise money and prepare for the Chicago marathon, I hope that I am able to inspire others. I hope that everyone can find a way to move forward after an unimaginable loss. Here's to moving forward and finding happiness despite terrible tragedy. I hope that you are all able to follow my journey and I am able to bring hope to others." |
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Kirstin celebrates her marathon run. |
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TeamCCF members and supporters gather for the Chicago Marathon event of 2019. |
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Join TeamCCF for the Bank of America Chicago Marathon, October 10, 2021.
All ages and athletic abilities are welcome!
Each member will receive:
- A welcome packet with a TeamCCF training shirt and awareness bracelets
- Supportive emails throughout your training
- Fundraising Toolkit packed with helpful ideas and fundraising tips
- Private social media pages to communicate with others on the team
- A TeamCCF racing singlet
- 18-week coach-led virtual training
- Meet and greet the weekend of the race for you and one guest
- Fundraising incentives including a TeamCCF visor, sweatshirt, windbreaker
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The CCF Awareness Store is celebrating Awareness Month and 15 years of the Cholangiocarcinoma Foundation.
This month CCF introduces new 15th Anniversary Wristbands ($5.50 - $47.99), a 15th Anniversary CCF T-shirt ($15 - $18, small to 3XL), and 15th Anniversary Pins ($4). Additional anniversary items coming soon, including jewelry and magnets.
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Free Awareness Month Items |
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In honor of Awareness Month, the store will give away 1,500 Anniversary Wristbands, 50 green Awareness Light Bulbs, and 50 Light It Green Yard Signs.
Use the following codes to redeem:
CCFTurns15: good for 1 package of 15 wristbands, plus shipping
CCFLight: good for 1 free light bulb, plus shipping
CCFYardSign: good for one free yard sign, plus shipping
Our online system only allows for the use of one promo code per order. If you would like to order both a light bulb and yard sign, you must order each in a separate transaction. Both codes include free shipping.
A special thank you to our Anniversary Sponsors, especially Taiho Oncology, for providing several Awareness Month giveaways and helping us spread awareness about cholangiocarcinoma.
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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.
Annual Conference Face to Face Patient and Caregiver Lounge Moderators
CCF is seeking moderators during the Annual Conference that serve to lead patient and caregiver discussions.
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February Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
February 11th - EMD Serono
February 25th - University of Chicago Liver Transplant presentation
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"What's Your 15?" Challenge
In light of the 15th year anniversary, CCF plans to celebrate while giving back, particularly with the number 15 in mind. Watch the video to learn how you can get involved.
Share photos of you with your wristbands. Be sure to tag CCF in your photos by using the hashtag #CCFturns15.
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San Francisco City Hall goes green for cholangiocarcinoma awareness. |
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Light It Green For CC
It's here!
As the Cholangiocarcinoma Foundation (CCF) hopes to share awareness far and wide this year, we plan to make the very most of the buildings that will be going green this February. Many of you have already been working on just that.
CCF has created a press release to share with the media in preparation for buildings going green. The more press coverage CCF can generate, the more attention the overall event will receive.
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You can find the link to the press release template above to help promote awareness of your campaign.
This template allows you to easily edit the document to add the building in your area and have a document prepared and ready for you to share with your local news, radio, and press. The template also includes brief facts about cholangiocarcinoma and CCF.
We look forward to the beginnings of another great campaign.
This event would not be possible without volunteers like you! Thank you for the time and energy in supporting this important work.
Don't forget to tag us on Instagram or Facebook as you share your photos with #ccawareness. Every effort grows the movement!
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