VOLUNTEER NEWSLETTER
AUGUST 2020
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- YOU DID IT!
- VIRTUAL CONFERENCE HIGHLIGHTS
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
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CCF sends a special thanks to so many of our incredible volunteers! July was a busy month with Moving for the Cure and the Virtual Conference, but the volunteers came through as always! We sincerely appreciate the support and participation. Seeing the photos, videos, and chatting with you during conference helped us feel connected. These are just a few of the highlights!
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VIRTUAL CONFERENCE HIGHLIGHTS
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The Cholangiocarcinoma Foundation introduced
Biomarkers Matter
, an important educational campaign for the benefit of its constituency and the broader community. To that end, the Foundation encourages broad dissemination of these resources and materials.
Biomarker testing can open the door to additional, personalized treatment options, including clinical trials.
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Sue Acquisto, Dr. Milind Javle, and Patricia Maxin are this year's recipients of the Mark R. Clements Award. Please join us in recognizing these incredible honorees.
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Dr. Supriya Kumar "Shoop" Saha was a gifted scientist and clinician. He was one of the first recipients of a Cholangiocarcinoma Fellowship Award. Shoop passed away on May 6, 2020 after battling the complications from a bone marrow transplant for the treatment of myelofibrosis. He was only 40 years old. In his memory, The Cholangiocarcinoma Foundation in partnership with Agios has created the Supriya "Shoop" Saha Fellowship Award. Please consider making a gift to remember Shoop and to support a rising young clinician or researcher.
Your support will help to further the work to which Shoop dedicated his professional career. Thank you for helping us to remember this brilliant researcher, compassionate physician, treasured colleague, and beloved friend.
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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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Andrea attends ‘Aware for All' and presents on a patient panel in Phoenix, AZ.
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Andrea Parrella has a professional background in adult literacy and community education. As a metastatic, stage IV cholangiocarcinoma patient four years into her journey, she has magnified her professional expertise and currently works feverishly as a patient advocate. Teaching other patients to self-advocate comes naturally to Andrea, with her professional background, and her life experiences as a patient.
Andrea is a Conference Volunteer, Research & Patient Advocate, and CARE Team Lead and has volunteered with CCF for nearly three years. Cancer, COVID-19, and 2020 have thrown a lot of unknowns at Andrea, yet she is eager to share what she has learned. ‘Life is a process,’ she shares and, ‘the only certainty is uncertainty, and making room for all of one’s emotions of fear, anger, hopelessness, hope and joy is a process.’ She certainly helps fellow patients cope with the roller coaster of emotions as she serves.
Andrea used to stress she hadn’t found the best road map for her cancer treatments, and worried about making wrong decisions. Now she teaches others to get all the information possible, get second opinions, challenge clinicians, bring questions to the table, and then follow your gut. One thing Andrea enjoys most about volunteering is creating the personal connections. She boldly shared with one clinician, “Don’t look at me like every other patient. I don’t think it’s a huge risk,’ and felt more vulnerable than ever. Andrea now knows being vulnerable is being strong, and both clinician and patient can benefit from the awareness vulnerability creates. She connected with a pharmaceutical representative at a conference, and soon was interviewed by that company and helped create a video to introduce a newly FDA approved drug she had been using in a clinical trial since 2017, all because of a personal connection.
Andrea wants to share hope with others. This spring Andrea was kicked off of her clinical trial, yet three days later the drug was FDA approved. She knows the science and research are moving ahead. Data keeps growing and changing, and treatment landscapes are changing every month. Andrea consistently and actively works to make the path easier for fellow patients and caregivers. It is certainly a great privilege and honor to recognize Andrea Parrella as Volunteer of the Month!
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Thank you for making
Moving for the Cure
such a success!
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Many of
TeamCC
F's
events this year had to be cancelled due to Covid-19 concerns. The concerns centered around Covid-19 have people staying at home, opting not to travel, and avoiding large gatherings. With this criteria in mind,
CCF
wanted to offer the cholangio community a way to engage with others, be active, raise money for the Foundation and have fun! Putting our heads together, we created a virtual fundraiser called
Moving for the Cure
. This fundraiser allowed people to participate in their hometown as an individual or with family. Each participate could choose any type of movement and complete it the week of July 5-11th.
TeamCCF
had never hosted a virtual fundraiser and was not sure how it would be received. Well, our expectations were blown out of the water! Participants from Malaysia, Canada, Australia, Singapore, and over 25 states in the US joined the fundraiser. Together we raised over $53,000!
Moving for the Cure is TeamCCF's largest single fundraiser to date and we could not have done it without the help of our wonderful volunteers and dedicated community members! The fundraiser will be accepting donations until August 15th. Donate
here
to any of our fundraisers
.
TeamCCF
would like to give a special thanks to our sponsors. Thank you to our Gold Level Sponsor Clark and Christine Ivory Foundation, our Silver Level Sponsor WPS Health Solutions and our Bronze Level Foundation Giles and Associates Family Psychology.
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Introducing Mike O'Langio!
Thank you Steven West for helping us name one of the stars of the Biomarkers Matter video! We immediately had several requests for t-shirts with Mike O'Langio designs and we're happy to announce those will be coming soon.
CCF Face Masks
are new in the store now. Also watch for several new arrivals - a new black CCF shirt, a new candle, and a new Christmas ornament, all coming soon to the
CCF Awareness Store
.
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Are you coming to the next Volunteer Check-In Meeting?
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LOCATION
Virtual Meeting
DATE AND TIME
09/15/20
5:00pm -
09/15/20
6:00pm
All volunteers are welcome. We will meet one another, discuss immediate volunteer needs, and foster discussion to improve our programs.
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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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August Schedule for
Patient Support Groups
Caregiver Support Groups
Educational Webinars
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2:00 pm MST, on Thursdays
Registration is free, but required and links to register are found above. Visit
cholangiocarcinoma.org/calendar
to see all the additional August events and links to get involved.
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In case you missed the fun in July, during CCF's
Moving for the Cure
, here's another great way to get involved!
Anyone can participate!
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Michelle's Hot Peeps Beat CC
5K and Fun Run ...
is going virtual!
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Aug 8th, Saturday
Join us,
from anywhere
, for
Michelle's Hot Peeps Beat CC
Virtual 5K and Fun Run benefiting the CCF while bringing awareness to this insidious, silent killer.
This race is held in honor of Michelle, who at age 47, was taken in the prime of her life following a heroic five-month battle with this disease, leaving behind a new husband and 2 kids, and to support those battling CC today and tomorrow.
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Registration closes on August 4th.
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is going virtual!
Join the event on Aug. 15th!
Tickets
are donation based. With tickets you'll have access to:
- Virtual Silent Auction
- Social Media Scavenger Hunt
- Summer Games
- Music
- Toasts and Virtual Connectivity
- A Best Hubs Competition
Smaller, satellite parties, referred to as "A Matter of Hope hubs" are encouraged as a way to celebrate in person, connect, and fundraise with friends on August 15th. There are multiple hubs already planned i
n MA, CT, ME, NH, and MD. You can join one of these hubs or host your own hub event. See the
website
to learn more.
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Long-term survivor, Heidi Rhea, is planning her second annual Oktoberfest 2020 in Covington, LA on September 19th. See details below.
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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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