- VOLUNTEER OF THE MONTH
- YOU DID IT!
- RESEARCH ADVOCACY UPDATE
- TEAMCCF UPDATE
- AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
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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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Arla sews her comfort quilts with a 1946 Singer Featherweight machine that she's named Betsy.
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Arla’s mother was a seamstress and sewed alterations throughout Arla’s childhood. Surrounded with sewing at home, Arla became a seamstress too, and enjoyed sewing for pleasure.
Arla found CCF a couple of months after her step-daughter Angie’s diagnosis. The two planned to attend the Annual Conference together in 2016, but Angie’s chemo and treatments prevented the trip. Angie had a liver resection, and had suffered serious complications including a 22 day hospital visit. Still grieving from Angie’s passing, in January of 2017, Arla bravely decided to attend the conference - a difficult choice knowing they had planned to go together and now Arla would go alone. Arla felt immediately welcomed as a newcomer and remembers thinking, “Angie would love this!” Arla was hooked.
She remembers seeing newly diagnosed patients wandering, searching, confused and trying to find answers. All feelings she and Angie had just experienced. While she felt frustrated at not being able to fix the problem, her thoughts turned to what she COULD do. Arla can sew.
That year at the conference the CholangioConnect program was first introduced. Arla volunteered as a caregiver mentor. Arla shares, “I was immediately drawn to the program. I get it!” When she heard stress, fear, and so much uncertainty in the voices of those she mentored, Arla wanted to comfort them in a special way. She began sewing lap robes and quilts to show her support in a tangible way. Patty Maxin, the CholangioConnect Program Manager, shares “Arla has been an integral part of CholangioConnect since the program launched in 2017. What I find most inspiring is her unique ability to fuse together compassion and wisdom. There’s a beauty in her capacity of support, as she creates lasting friendships. To those she mentors, she has become a part of their lives.” Arla has an innate capacity to listen, offer help, and reassure with an attitude of “I’m here for you.”
Arla understands that caregivers need support too. Often caregivers take on the stress and worry and hide it all away. A phone call for support helped Arla feel like a doer and a fixer instead of someone experiencing something completely out of her control. Additionally, Arla also serves as a Conference volunteer and continues to pay it forward as she befriends and welcomes all who attend, especially the newcomers. It is a great honor and privilege for CCF to recognize Arla Price as the Volunteer of the Month.
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In October alone, over 511 hours of volunteer service happened! Those hours were reported by only 27 volunteers. Wow! What you do makes a difference, and when you report your service, the impact grows.
A friendly reminder to please submit your hours worked each month. Every minute counts!
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Michael S. leads the fundraising efforts of his student council to raise awareness and fund research for cholangiocarcinoma.
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Heidi Rhea walks the runway at
You Night in Mandeville, LA to spread awareness and help women embrace life beyond cancer.
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Rebecca Mullen attends a conference at Saddleback Memorial Hospital in Laguna Hills, CA and builds connections and awareness with clinical trial representatives.
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Libby Wolfe and Abbey Sprague work to create symposium bags for attendees in Chicago.
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CARE Team meets with Dr. Fung in Chicago.
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Stacie Lindsey, Dr. Milind Javle, Mary and Jack Martynow, and Cindy Mrotek attend the symposium in Chicago.
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The CARE Team arrived in Chicago ready to spread awareness in October. The team organized a regional symposium at University of Chicago with over 100 attendees. Presenters included University of Chicago specialists and keynote speaker Dr. Miillind Javle. The CCF Cheer Squad was in full force braving the cold in support of Team CCF runners, participating in the Chicago Marathon.
The amazing CCF tent (created by caregiver Andy Macias) was located at mile 15 on charity row, but our cheerleaders could be heard from miles away. The jam packed agenda also included a pre-marathon brunch, industry meetings, literature drop off to hospitals, a patient and caregiver luncheon and homemade pizza at John and Beth Fung’s place. The weekend was a success and we are looking forward to next year and hope you all can join us.
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Michael Puliafico, running for TeamCCF, celebrates at NY marathon.
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Mark Williams is all smiles at the finish line of NY marathon.
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Heidi Rhea and Meredith McGuffage gather at the TeamCCF tent in Indianapolis.
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TeamCCF runners unite in Philadelphia.
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For the first time ever, TeamCCF participated in the New York City Marathon. With just five team members, over $17,000 was raised. It was an amazing day for our runners. A special shout out to Shannon Giasullo who joined the TeamCCF Cheer Squad and supported the marathoners. We cannot wait for next year and will start forming the 2020 team in late December.
The following weekend was the Indianapolis Marathon and Half Marathon. The team had six runners who raised over $4,600. It was a cold but sunny day and these team members were so supportive of one another. We hope to do it again next year.
The Philadelphia Marathon and 8k was November 23 and 24. TeamCCF consisted of twelve 8k runners and 1 marathoner. Each team member was incredibly dedicated. Lots of family and friends came out to cheer. Together the team crushed their fundraising goal and raised over $6,600 and the donations are still coming in!
Reminder, Team CCF is currently forming the Chicago Marathon team for 2020. Check out TeamCCF.org for more information.
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The CCF Awareness Store has candles on sale today! Watch for other sale events happening every weekend in December.
Reg. price $12.00
Sale price $9.99
Today only, while supplies last
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Social Media Contributors
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This coming December CCF will begin its annual
Candles for the Cure
campaign.
CCF would like to share your story. Please tell us why you will light a candle in honor or memory of someone you love.
Tips for videos:
- Use horizontal format.
- Use best lighting.
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Please see Nirma Patel's video as example content.
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Join us!
December 18th
9:00 am PST
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Join this webinar to hear more about your health data rights and CCF’s collaboration with
Ciitizen
,
To assist you with gathering your health information, CCF has partnered with
Ciitizen
to help our patients collect their health data in one secure place,
at no cost to you
. Visit
Ciitizen
at
www.ciitizen.com/ccf
to sign-up and request your health records. It is quick and easy!
Help us meet our goal of 100 sign-ups by 2020!
For every cholangiocarcinoma patient that requests their records by December 31
st
,
Ciitizen
will donate $10 to CCF.
And, your name will
be entered into a random drawing to win a travel scholarship (including hotel & airfare) to attend the
2020 Cholangiocarcinoma Foundation's Annual Conference
in Salt Lake City!
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When your control your data, you can more easily coordinate your care, get second opinions and contribute to the CCF registry.
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Dec. 6th and 7th
Washington, D.C.
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