- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS AND WEBINARS
- SCIENTIFIC UPDATE
|
|
- TEAMCCF UPDATE
- SURVIVOR STORY
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- UPCOMING EVENTS
|
|
Each month, we recognize those whose contributions inspire us and who demonstrate excellence with their service to others. We thank those outstanding individuals and honor their immense efforts, time, and resources that are generously given to the Foundation. |
|
Marcia Van Gorden loves living in the city. She is a mother of four children and worked for 25 years as an interstate child support officer before retiring in 2017. She loved making things better for children and helping their families. She enjoys gardening, meeting new people, spending time with family, and hugs. Marcia was raised as an only child, but building connections and families are what she does best. Her parents taught her the value of service, as she remembers their advice, “change doesn’t happen until you make the effort to affect the change.” She is a Marine Mom and nearly nine years ago she helped form a military Marine Mom group that still meets in restaurants occasionally. The group has grown to nearly 100 moms.
|
|
|
Only three and a half months into retirement, a cholangiocarcinoma diagnosis reared its ugly head. Looking back now, Marcia feels she may have ignored some unusual back pain, but at the time, the pain was easy to explain away. One night after excruciating back pain, she found herself in the emergency room. After blood work and CT scans, the medical team told her she had the worst case of gall stones the team had ever seen. After scheduling surgery, and on her way out of the hospital, she was stopped with additional lab results and told that she actually had cholangiocarcinoma. She remembers the doctor saying, "no one deals with that here."
It immediately made sense to Marcia to be seen by someone experienced with cholangiocarcinoma, so she set off for a visit at the Mayo Clinic about an hour and a half drive away. After a resection, and cycle of gem/cis, she was NED for two years. For the first year, she knew no one else with this rare cancer. But eventually, she found the Cholangiocarcinoma Foundation (CCF) and the Facebook page. She started building her CCF family. She attended her first annual conference in 2019 and was blown away at how meaningful and special it was for her to sit in a room and talk to others walking a similar journey.
Marcia has built a local patient and caregiver meet-up group. She has written for the ‘Cholangio…What?’ blog, created content for CCF campaigns, including videos, and serves as a social media volunteer. As a nine-year-old, she had experimental heart surgery that saved her life. She feels her volunteer work is a way to pay back society for the blessings research and science have gifted her. She is a tremendous networker and welcomes opportunities to help and befriend other patients. Marcia shares by volunteering, “I get more than I give. I get hope. I get happiness.” It is a great privilege and honor to recognize her as the Volunteer of the Month.
|
|
Candles for the Cure Success |
|
Our candles burned brightly all over the world in 2021!
Thank you to everyone in our CCF Community for making this 2021 campaign so successful! Together, we had 386 donors give an amazing $169,786 to honor their loved ones affected by cholangiocarcinoma and help us continue to support patients.
|
|
|
|
In case you missed it, watch the video to see why these individuals shared their light.
Remember, February is Cholangiocarcinoma Awareness Month and you will see plenty of evidence of people lighting their homes and buildings green. Spread the word and let’s keep the focus on making cholangiocarcinoma a treatable disease.
|
|
|
|
February Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
|
2:00 p.m. MST, on Thursdays
*NOTE THE DATE CHANGE FOR THIS MEETING
February 10th - Elevation Oncology
February 24th - CCF Annual Conference
|
|
Note: This is a great resource for CholangioConnect Mentors to share with either the newly diagnosed or any new mentees. |
|
SCIENTIFIC AND ADVOCACY UPDATES |
|
Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer
|
The International Cholangiocarcinoma Research Network (ICRN) and the European Network for the Study of Cholangiocarcinoma (ENS-CCA) highlight global CCA expert scientists and physicians. This initiative will help CCA experts know each other and interact with a more diverse group of global leaders in the field. We hope that knowing each other better will stimulate innovative and collaborative ideas and opportunities. |
|
|
Meet Dr. Davide Melisi from the University of Verona, Italy.
|
|
Meet Dr. Jennifer Wo from Massachusetts General Hospital.
|
|
Looking for your next race? |
|
TeamCCF is recruiting for the Bank of America Chicago Marathon, on Oct. 9th, and the TCS New York City Marathon, on Nov. 6th. Email meredith@cholangiocarcinoma.org if you would like to join our team!
|
|
|
|
Jonathan Whiting is preparing to swim the English Channel for his fundraiser, 21 Miles of Hope.
His swim is scheduled to be July 17 or July 23, 2022.
|
|
|
|
Delorean Ostrom will run a marathon every month in 2022.
Delorean's next race is the Publix Atlanta Marathon, on Feb 27th.
|
|
|
|
Miracles Really Do Happen
Arlene Dworetsky
With all the significant strides in cancer research, and new immunotherapy treatments coming out all the time, I feel in my heart that there is a tremendous amount of hope we should have for cholangiocarcinoma patients to beat this cancer - and cancer patients in general. I am a perfect example of hope, and success, and wish all others out there battling this horrific disease, to be as successful as I have been.
|
|
|
|
The Awareness Store is getting ready for the 2022 Annual Conference. New items will be added including a zip-up hoodie, coffee mug, short-sleeved shirt, winter hat, and jewelry.
150 people redeemed the free giveaway of yard signs and green light bulbs in preparation for Awareness month in February. Thank you to Taiho Oncology whose sponsorship enabled the Foundation to offer these free items.
|
|
|
|
To show appreciation and thank our sponsor, we invite all to use #greenforcca and share photos of the free gifts which were mailed last month. Tag us on social media during February's month-long event. For those without social media, you can upload your green light bulb photos to Dropbox here.
|
|
For the second consecutive year, this awareness project is made possible with support from
Taiho Oncology.
|
|
5 Ways to Get Involved Now: |
|
World Cholangiocarcinoma Day
February 12th, 2022
|
|
Become an advocate with just a few simple clicks.
Download numerous email signatures, Instagram and Facebook posts, and even presentation graphics to educate about symptoms, risk factors, genomic testing, and awareness. Share the graphics on social media. Use #SeeCCA when posting on social media.
|
|
The Global Cholangiocarcinoma Alliance (GCA) has united to establish a global voice in cholangiocarcinoma (CCA) through community collaborations. The GCA has a shared vision to raise the awareness of CCA in order to improve prevention, survival, and the quality of life of patients with CCA globally. |
|
Light it Green for CCA Walk
Wednesday, Feb. 23rd
|
Light it Green for CCA Walk is an evening demonstration in downtown Salt Lake City to commemorate awareness month during the upcoming annual conference. Register for the walk within the annual conference registration. |
|
|
Show us your green!
Join us in wearing your green on Wed., Feb. 23rd, in support of all cholangiocarcinoma patients. Submit your photos directly to the photo gallery within the annual conference platform by 5:00 pm MT. Get creative and join the fun. Share your photos on social media and tag #ccfac2022 and #ccfwearsgreen.
|
|
|
|
|
|
|
