- VOLUNTEER OF THE MONTH
- PATIENT SCHOLARSHIP
- YOU DID IT!
- TEAMCCF UPDATE
- AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
|
|
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.
|
|
Lourdes Rocha works as a Child Life Specialist at a children’s hospital in the Los Angeles area. She works in patient advocacy helping children understand why they are finding themselves in the hospital, as well as providing support and resources for the children, their siblings and families. Helping patients and families is certainly in her nature.
Almost ten years ago, Lourdes’ father was diagnosed with cholangiocarcinoma. She discovered CCF’s discussion boards and forum posts. She was soon welcomed to the group with kindness, and friendships began to develop. Unfortunately, her father passed away in 2012 and it was difficult. Seeking to keep her father’s memory alive she made plans to attend an event in Washington D.C. Her father was a veteran and every year in June the Vietnam Veterans Memorial Fund (VVMF) hosts the
In Memory Day
ceremony where loved ones come together to recognize the veterans they lost to service-connected issues, and meet other family members who share similar experiences. It was in Washington D.C. that Lourdes met a volunteer connected to CCF - Anne Petitti, who had lost her husband to cholangiocarcinoma. Anne had initiated support groups because of the frustration she felt as she tried to navigate the VA claims process. Anne and Eileen Skahill co-created a Facebook group to assist other veterans and provide steps on how to file a claim and furnish research to support the claims. When new family members were added to the private group, Lourdes was there to welcome them, assist and provide much needed support. Lourdes has continued this work for over 7 years.
|
|
|
|
|
Additionally, she has also worked on numerous data and administrative projects for CCF, fundraised, and currently handles CCF’s veterans program entirely. Having gone through the VA claims process herself she knows first-hand how overwhelming and emotionally draining it can be. While her father first submitted his own claim, it took an additional claim and several appeals before it was finally approved six years later. Lourdes works to pay forward the kindness others showed her along the journey. She also wants others to know not to give up, and put your health first. She is truly committed to building a community and providing emotional support as well as key research and resources. It is a great honor and privilege to recognize Lourdes Rocha as the Volunteer of the Month!
|
|
2020 Annual Conference Patient Scholarship:
CCF is very pleased to provide travel scholarships for patients to attend the Annual Conference. Awards will cover costs for registration, hotel, on-site meals, and transportation. Due to the high level of interest and limited number of scholarships available, awardees will be randomly selected from the applications received. We sincerely wish we could provide financial support to everyone in need and hope to obtain more funding in the future
.
|
|
|
Eligibility:
•Patients only
•Applicants worldwide are encouraged to apply
•Past scholarship recipients are NOT eligible to apply
•Because funds are limited, we ask that you only apply if you have significant financial need.
Deadline to Apply:
Monday, February 10th
Award Notification:
Friday, February 17th
|
|
Eric Parker welcomes participants, and the race begins.
|
|
Runners and walkers alike participate in
Jingle for Janet
.
|
|
|
|
The second annual
Jingle for Janet
was held on Tuesday, December 24 in Waterford, Wisconsin. The 5k run/3k walk was organized by Eric Parker. Parker began the race in memory of his wife, Janet, who died October 24, 2018.
Jingle for Janet
had over 300 runners who ran either in person or as a virtual runner. The event raised $6,800 for the Cholangiocarcinoma Foundation.
|
|
Looking to fundraise for the CCF? Visit
TeamCCF.org
to see the list of events for 2020 including the Bank of America Chicago Marathon, the New York City Marathon, the Indianapolis Monumental Marathon and Half Marathon and the Colfax/Denver Marathon.
As always, if you have your own event you would like to compete in, we can help you with a personalized fundraising page, provide support training and TeamCCF gear.
|
|
Light It Green Yard Sign - $10.00
|
|
Awareness Light Bulb - reg. price $3.50
|
|
Light It Green Yard Sign is now available for purchase! The sign is a collapsible polybag sign designed for easy setup and storage. It is meant to be used in conjunction with our Awareness Light Bulb.
Deal of the Month
: Buy a Light It Green Yard Sign, and get a free Awareness Light Bulb.
Use code:
LIGHTITGREEN
once both items are in your cart.
|
|
|
|
Purpose: CholangioConnect Mentors offer encouragement. Mentors help others through difficult periods of diagnosis, treatment, and when needed, palliative care which can be extremely stressful and confusing.
Mentors are cholangiocarcinoma survivors, patients, caregivers, family members or friends of cholangiocarcinoma patients. The service is free and is intended to offer support, not to give medical advice or recommendations. Any information shared between mentors and patients concerning treatments, medications or therapies should be discussed with a physician.
|
|
Key Responsibilities:
- Creates personalized connections that enable one-on-one support among cholangiocarcinoma fighters, survivors and caregivers;
- Builds peer-to-peer connections and helps anyone touched by cholangiocarcinoma, at any stage in their journey.
|
|
February is Cholangiocarcionoma Awareness Month, with February 12th being World Cholangiocarcinoma Day.
|
|
 |
Badge it:
Change your profile image to the world cholangiocarcinoma badge above. Include the official World Cholangiocarcinoma Day hashtag of #WorldCCADay.
Wear your wristbands or CCF gear proudly and take a selfie to share online.
|
|
|
|
Share it:
CCF has created FB frames to show your support, while Global Cholangiocarcinoma Alliance (GCA) has created various graphics to post and share on all your social media platforms. Find the additional graphics at the link below:
|
|
|
|
Annual Conference T-shirts
|
Annual Conference 2020 is just around the corner! CCF is opening T-shirt pre-sales for the conference. White short sleeved t-shirts will be available to pick up
at the conference only
. Shirts are available in sizes small through 3XL and are $20.00 each.
|
|
|
Inaugural
Quack Out Cholangio to Crush Bile Duct Cancer
will be held on Saturday, March 28, 2020 in Wilmington, Delaware at the HARE Pavilion. Registration is now open. See
Quack Out Cholangio 5K Run/Walk
for more details.
|
|
|
|
|
|
|
