Wow, talk about a gratifying and full couple of days! As a volunteer for the Cholangiocarcinoma Foundation (CCF), it was an honor to recently participate in two events that are helping others affected by cholangiocarcinoma (CCA).
The first was the Cholangiocarcinoma Mini-Symposium, hosted by Buffalo, NY's Roswell Park Comprehensive Cancer Center and CCF. The following day was the 4th annual Quack Out Cholangio 5K fundraiser, held more than 400 miles away in Newark, DE. Between the two events, I was able to interact with a variety of patients, caregivers, doctors, researchers, and CCF staff. Whether one-on-one or in group settings, the conversations and presentations were inspiring.
It's a beautiful drive at this time of year (at least while the sun is up) from my home in MD to the Buffalo area. I was happy to be in "The City of Light"; one of at least seven (yes, seven) nicknames Buffalo holds. The nickname came about over 100
years ago, as Buffalo was the nation's first city in the U.S. to have widespread electricity. So please hold the "The City of Light" in your mind. I'll come back to that later.
My primary purpose for being in Buffalo was to speak with the participating patients and caregivers about the relaunch of CCF CARE Teams; an idea Melinda Bachini, CCF's Director of Patient Services, started several years ago; before being derailed by the pandemic.
So what does CARE Team stand for?" It's Cholangiocarcinoma Awareness Research and Education. I'd also add that Advocacy may be used interchangeably for the letter A. The premise is to support the efforts of the Foundation by bringing those interested together in sharing information that raises awareness, supports research and education of cholangiocarcinoma while also potentially assisting fundraising efforts.
In collaboration with CCF staff, volunteers in local or regional locations would implement activities that support the four core values of the Foundation: Patients first / Collaboration / Innovation / Sense of urgency.
Who should be a part of CARE Teams? People who desire to be engaged; which could potentially include patients, caregivers, medical professionals, industry partners, friends, and media. How would this be done? By developing a sense of common ground, create activities that connect people in a variety of ways. Events would need to be uplifting, provide hope, support, and include information sharing.
Although there is much commonality associated with CCA, it's also recognized that one size doesn't fit all. There is a uniqueness in people's interests and skill sets. Some people may be inclined towards social activities, some in fundraising that supports research, and others in coordinating educational programs with hospitals and institutions. Each of these components is important.
Some patients and caregivers traveled over five hours to attend the event from locations in NY, PA, and Ontario, CA. I was encouraged to see that everyone who signed the contact list is interested in getting together again. That's a start!
If nothing else, the human connection between other patients and caregivers can be very helpful. If you have any thoughts or interest in becoming involved, please reach out to Claire Condrey, CCF's Volunteer Coordinator, at Claire.Condrey@curecca.org . You can also feel free to reach out to Patient Advocates, Lourdes Rocha-Nussbaum at firstname.lastname@example.org or Emma Mach at email@example.com. Working in collaboration with Claire, I'd also be happy to discuss ideas with you. My email is firstname.lastname@example.org.
Presentations during the mini-symposium covered a variety of topics, including updates about the Foundation, the International Cholangiocarcinoma Research Network (ICRN), Diagnosis and Stenting, Surgical Management, Chemotherapy Landscape, CCA Research, Targeted Therapies, Liver Directed Therapies, Care at Roswell Park, Case Presentation and Panel Discussion, as well as a patient story.
So, going back to Buffalo being the "City of Light"…While thinking about the nickname, I recalled a tribute I recently read about Tom Leitzke, a 16-year CCA patient, that really resonated with me. In part, it said, "To rise above your best creates the Light and the inspiration for those that follow. So do a huge honor and take others along for the ride as you rise above your best."
After the symposium, I headed south towards the Wilmington / Newark, DE, area to volunteer the next day at the Quack Out Cholangio 5K Run/Walk to Crush Bile Duct Cancer. Developed and hosted by Jan and Dean Meyer, this event continues to grow and raise awareness and funds for CCA research.
Since I like to learn about areas I'm traveling to, I often start by trying to understand the locale's nickname. For the past 15 years or so, Wilmington has been referred to as "In The Middle Of It All" and Newark "A New Day Every Day". Well, these references certainly hold true when the Quack Out 5K is being held!
Although the final results aren't yet in, I'd have to say it was a huge success. With hundreds of runners and walkers made up of patients, caregivers, and team supporters from family, friends, colleagues, industry partners, sponsors, volunteers, and CCF staff, it was truly inspirational. One of the special additions this year was tribute/memorial placards that Jan made with the names and photos of those that have passed. These were distributed to all applicable participants and were very much appreciated.
As with any event such as this, much planning, time and energy goes into ensuring success. For that, we thank Jan and Dean as well as everyone involved!
In closing….don't underestimate the impact volunteering can have on yourself, as well as others. A quote attributed to Dr. Seuss that I often think of states, "To the world, you may be one person. To one person, you may be the world."
Give A Little Whistle!