- VOLUNTEER CHECK-IN MEETING
- VIRTUAL CONFERENCE NEWS
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
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VOLUNTEER CHECK-IN MEETING
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Sending a special thanks to all of the volunteers who attended our first Volunteer Check-In Zoom Call last month! We certainly enjoyed spending time with you and sharing CCF opportunities. The feedback we received always serves to help us improve communications, training, and the volunteer programs themselves.
Many of our fundraising volunteers are currently facing difficult decisions with their fundraising events due to the COVID-19 pandemic. Because of that urgent need, and to support them in their efforts, CCF has planned a
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All volunteers are welcome to attend. We plan to introduce a new toolkit to support fundraising, offer some best practices, and learn from volunteers who have shifted their events to a virtual platform.
Register in advance for this meeting
here
. After registering, you will receive a confirmation email containing instructions to join the meeting.
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CCF is thrilled to announce that William W. Li, MD, the world-renowned physician, scientist, speaker, and author of
EAT TO BEAT DISEASE
will be our keynote speaker at our 2020 Annual Conference on July 22nd - July 24! Thanks to the generosity of our sponsors this year's registration is free, but required. Register
here
.
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Eat to Beat Disease: The New Science of How Your Body Can Heal Itself
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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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Rick, along with his wife, traveling to
the site of the Buddha's enlightenment, Bodhgaya, during a conference.
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Rick is a long term cholangiocarcinoma survivor. He and his wife both enjoy teaching at the University of Minnesota and are historian archeologists. Rick has studied, authored, and taught about Indian art throughout his career. He is currently writing his last book on the connections between India and Southeast Asia and the 6th century adoption of Buddhism. He enjoys traveling and speaks multiple languages.
Almost nine years ago he was diagnosed with cholangiocarcinoma. He had never heard of anyone with the disease. His diagnosis story may be atypical, but certainly demonstrates the gravity of patient advocacy. After surgery, his oncologist presented him with an abysmally negative prognosis and suggested he enjoy the last bit of the journey of life while he had the chance. In the firmest way possible Rick self-advocated with an emphatic “no” to that prognosis, and demanded that
every
treatment possible be brought to the table for discussion. He went on with treatments of radiation and standard of care chemotherapy with tremendous success.
After connecting with a CCF Board Member over the phone, Rick began volunteering as a Patient Mentor with the CholangioConnect program. Since 2017 he has worked to offer individual support to other patients and families as they begin their treatment journey. Rick shares that fulfilling individual needs are one of the most rewarding and satisfying experiences. When an international patient and family needed help in finding a doctor and obtaining a second opinion, Rick worked to make it happen even despite the language barrier as he sought out help from a colleague to offer the family translations assistance until they felt comfortable with the doctors they had visited for a treatment plan.
Rick shared how much he enjoys connecting with the newly diagnosed, because he remembers what it is like to be on the receiving end of very difficult news regarding a rare cancer, and he wants to offer resources, information, as well as hope, to benefit other patients in making the very best decisions about their own treatment and care. He enjoys the conversations with other patients and desires to share encouragement and support through the entire journey - diagnosis, treatment, healing, and dealing with recovery. Rick feels that since he has been given the good fortune to survive this disease, he has an obligation to help others, and help he has!
Patty Maxin, CholangioConnect’s Program Manager, shares “
Rick is genuinely interested in mentoring others around the globe. He is a master at navigating the challenges of connecting from different time zones, both because of his international travels and the locations of his mentees. When asked to help, Rick has always been there, even when personal circumstances may have another person taking a pass. He is an extraordinary listener and has an incredible ability to know when to reach out further in order to assist those with whom he has connected. He is such an asset to our program!” It is an honor and privilege to recognize Rick Asher as the Volunteer of the Month.
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Only ONE WEEK until our Moving for the Cure event! Be sure to register by July 3rd! If you are unable to
register
, you can still help by donating. Take a look at our
Reason2Race
page and help support
#M4C2020.
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See the reasons these
Moving for the Cure
participants are gearing up for their events.
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CCF has been overwhelmed by the response of the cholangio community. Together we have raised over $25,000. We have participants from Malaysia, Canada and 26 states! We are absolutely blown away.
With these last two weeks, I ask that you give it your all to reach your fundraising goal. 100% of the funds raised will go to the Cholangiocarcinoma Foundation.
Meredith McGuffage, TeamCCF Coordinator
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25% off
with code "hope20"
all month long!
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The CCF Awareness Store added a few items including a Thread Wallet, a minimalist, gender neutral wallet that will safely carry 2-10 cards and TeamCCF apparel including hoodies, t-shirts, water bottles, visors and winter hats. Keep an eye out during the Annual Conference for special deals for the store!
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Social Media Influencers
CCF has an immediate need for volunteers participating in Moving for the Cure on July 5th - 11th. CCF wants volunteers to create video content to promote the event, as well as share participation during the campaign. Participants do not need to be marathon runners. People of any athletic ability can participate.
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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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Administrative Volunteer
CCF is seeking volunteers who would like to share their story in video format. Stories specifically regarding the Annual Conference and its benefits are wanted.
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July Schedule for
Patient Support Groups
Caregiver Support Groups
Educational Webinars
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2:00 pm MST, on Thursdays
July 23rd
- No Meeting - CCF Annual Conference
July 30th
- No Meeting
Registration is free, but required and links to register are found above. Visit
cholangiocarcinoma.org/calendar
to see all the future events and links to get involved.
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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 Aug. 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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