- YOU DID IT!
- VIRTUAL CONFERENCE HIGHLIGHTS
- VOLUNTEER OF THE MONTH
- RESEARCH ADVOCACY UPDATE
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEER TRAINING AND NEEDS
- UPCOMING EVENTS
|
|
"I want to give a huge thank you to our A Matter of Hope community who, despite a pandemic and economic crisis, rolled with the changes, kept an open mind, and participated to the max, regardless. It would have been impossible to raise over 17K and engage with well over 200 people, without your help, your commitment to the cause, and your dedicated to keeping Matt's fighting spirit alive and well."
-Christina Sgambato, A Matter of Hope Founding Organizer
|
|
Bonnie and Pat participate in the 5K virtual event. |
|
I would like to extend my great appreciation to all the sponsors, runners, The CCF, and everyone who helped make this event a big success in the face of unprecedented challenges. The success is attributable to the motivated people who want to honor Michelle by working for that cure within the next 10 years. THANK YOU all!
- John McDonald, Michelle's Hot Peeps Beat CC Founding Organizer
|
|
VIRTUAL CONFERENCE HIGHLIGHTS |
|
CONFERENCE BY THE NUMBERS |
|
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. |
|
Steven shares his CCF hope in preparation for CCF's first virtual conference. |
|
Steven West has been NED for over five years now. When asked why Steven volunteers, he shares that he vividly remembers his diagnosis moment and how incredibly stifling it all was. A fog of confusion, overwhelm, fear and “now what” seems to bury the mind instantaneously. In those first few hours after diagnosis he wanted nothing more than to meet someone else who had cholangiocarcinoma. He wanted to meet a survivor, and he had a lot of questions to get answered.
Fast forward five years and now Steven serves to do exactly that for other cholangiocarcinoma warriors - provide hope by unburying the bricks of overwhelm and create a pathway for getting answers. Steven has gained a wealth of knowledge, yet remembers being the patient with all of the stupid questions. He had a plethora of extremely specific questions back in 2014, months after he had been told he had a hemangioma on his liver in 2013. After a kidney stone episode, Steven consulted with a urologist who encouraged him to follow up with a biopsy and demand further testing on the hemangioma. After that conversation, Steven began advocating for his health in ways he would have never dreamed he would have to, but is certainly glad he did.
Every test result had Steven constantly googling and researching and wanting even more answers. Doctors asked him to stay off Google, but Steven was persistent. He spent even more time researching, and eventually went to his own medical team with the cholangiocarcinoma diagnosis, only to have doctors confirm “your spidey-sense was correct,’ shares Steven. After a second opinion, a surgery was scheduled at MD Anderson. There he met another patient and they enjoyed talking and made trips to see each other often. The two newfound friends had become mentors for each other, without even realizing it. After Steven’s aha moment, he realized he could help others too, and be a friend.
Steven applied for and received a patient scholarship to attend his first Annual Conference, and has been attending and serving as a volunteer ever since. He had met other patients through the Facebook Warrior page, but felt so at home at the conference. He brought his wife and two children to the conference, and realized there were other family members involved at CCF. A cancer diagnosis impacts the entire patient’s family, and he felt he’d gained a new family participating in the conference. Steven serves as an annual conference volunteer and a patient mentor in the CholangioConnect program. It is a great honor and privilege to recognize Steven West as Volunteer of the Month!
|
|
Research Advocates Update |
|
A world pandemic hasn’t stopped the Research Advocates from continuing their education and advocacy work. Our team dedicated many hours participating on patient advisory boards for our annual conference industry sponsors. These boards allow the sharing of the patient and caregiver perspective. They also spent time with Incyte, which was very exciting as the FDA approved Incyte’s Pemazyre (pemigatinib) as First Targeted Treatment for Adults with Previously Treated, Unresectable Locally Advanced or Metastatic Cholangiocarcinoma. Many of our research advocates worked on reviewing patients materials and pamphlets for several organizations. A big thank you to George Riddle for taking scientific articles and rewriting them into patient friendly versions. They continue to have monthly training meetings and although they miss attending conferences and representing the CCF, they are adjusting to a new normal. Our C.A.R.E Team leaders are launching new teams with the hopes of having them in each state someday. |
|
International Cholangiocarcinoma Research Network (ICRN) is a global collaboration of +170 physicians and researchers from +75 renowned institutions worldwide who are working in concert to rapidly translate scientific discoveries into practice for cholangiocarcinoma patients. Currently, ICRN members are building a clinically annotated molecular database to understand the natural history of various cholangiocarcinoma molecular subtypes and define the best treatment opportunities. They are also working in partnership with all cholangiocarcinoma stakeholders to foster the most promising clinical, translational, and basic science studies in precision medicine, cancer genomics, cancer immunotherapy, cancer biomarkers, radiotherapy, and neoadjuvant therapy space. |
|
Rob Howard, his family, friends, and Dad celebrate Moving for the Cure together. |
|
Rob Howard found the Cholangiocarcinoma Foundation in May of 2020 when his father was diagnosed with cancer. Initially, they only share the news of his diagnosis with immediate family members. “It was easier to process with a small inner circle,” Rob shared. “At first, I was uneasy with fundraising. However, I knew how important CCF has been to me, my dad, and my family.” Rob explained. “I sent it out to extended family and a broader circle of friends who were hearing the news about my dad for the first time. Like us, it was likely the first time they would learn about cholangiocarcinoma and the wonderful Cholangiocarcinoma Foundation. Within just a few days I had exceeded my $1000 goal. I made an adjustment to aim for $2000 and was surprised to surpass that goal after another few days. I was humbled by the encouraging support, prayers, and generous donations in honor of my dad, my family, and me. It was such a comfort to know that we had some many people in our corner cheering us on, praying for us and wishing us well.” Howard completed his half marathon run on Saturday, July 11. He mapped out 13.1 miles from his sister's house in Encinitas, California, and finished at his parent’s house in Del Mar where he was greeted by an entourage of cheering neighbors and his proud dad. In the end, Howard raised $6,028.
To read more highlights about Moving for the Cure, visit the Moving for the Cure recap on the website here.
|
|
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.
|
|
So many large scale events like the Boston Marathon, New York City Marathon and the Chicago Marathon have sadly been cancelled this year. However our amazing TeamCCF members are still active. Kevin Coyle will hike Mount Washington Saturday, Sept. 5th in his second annual A Hike for Jill, A Hike for a Cure which he began last year in memory of his wife, Jill. Kevin has raised over $2,800 so far with a goal of $3,500.
|
|
The Awareness Store will be adding a few items this month including a short sleeved black Cholangiocarcinoma t-shirt available in Small through 3XL. The shirt is a Gildan Softstyle 4.5 oz., pre-shrunk 100% ringspun cotton shirt. Look for this coming very soon.
There has been a high demand for the CCF mask. We just ordered 1,000 more so our store will be well stocked. These masks are adjustable, will fit securely around your nose, includes a pocket for a filter, is made of 5 layers of 85% cotton and 15% polyester blend and are comfortable yet fashionable!
Also, keep an eye out for our collectible Christmas ornament which will be available by end of September. This unique ornament will make a great gift this holiday season.
|
|
VOLUNTEER TRAINING AND NEEDS |
|
Volunteer Fundraising Webinar
September 8th
6:00 pm MST
All volunteers are welcome. Come learn how to take the fear out of fundraising. CCF is introducing an incredible new virtual fundraising tool. Register below to receive the link to join.
|
|
Volunteer Advocacy Meeting
September 15th
5:00 pm MST
All volunteers are welcome. Come learn all about advocacy, immediate needs, and ways to get involved. Register below to receive the link to join.
|
|
Administrative Volunteer
CCF needs volunteers willing to review various cancer resource links and submit pertinent resources to the IT staff for website publishing.
|
|
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.
|
|
|
|
September Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
|
2:00 pm MST, on Thursdays
September 10th - TBD
September 24th - Clinical Trial Finder
|
|
|
|
Long-term survivor, Heidi Rhea, is planning her second annual Oktoberfest 2020. She has pivoted and the event will now become a virtual one. Look for more information to follow, as her event has moved from September to October this year. She will have t-shirts for sale and various other items for purchase, all benefiting the CCF and finding a cure! |
|
"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!!"
|
|
|
|
|
|
|
|
