- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS
- SCIENTIFIC UPDATE
- TEAMCCF UPDATE
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- 15TH ANNIVERSARY HAPPENINGS
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- 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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Dave and Linda Fleischer might be retired, but there is no slowing down in sight. These grandparents enjoy family time, rock painting, and travel, particularly road tripping. Dave and Linda are bereaved caregivers. They lost their daughter, Sarah Bennett, to cholangiocarcinoma at the age of 35. She passed away four years after her diagnosis in September of 2018. Sarah was an incredibly brave wife, mother, and friend to many in this community as she served as a passionate advocate who endured two liver resections, chemotherapy, a partial splenectomy, and three clinical trials. Sarah’s active role as a volunteer fostered unimaginable community connections. Dave and Linda were supportive parents and advocates, even attending the Annual Conference twice during Sarah’s treatments.
In early 2015 Sarah began a private Facebook group for cholangiocarcinoma patients - a safe place for patients to connect and share experiences. Linda eventually realized that caregivers needed a space to share their voice and make connections too. Nearly three months following the creation of the patient group, Linda founded the caregiver Facebook group, which is still used today with over 1,500 followers.
To say Sarah’s loss was difficult does not adequately explain the heartache. Taking time to grieve Sarah’s loss was absolutely necessary and beneficial. After Dave retired, he had the feeling that perhaps it was his time to pick up the torch from Sarah and Linda and carry it forward. Dave made plans to serve as a conference volunteer in 2020, but that was postponed due to COVID restrictions. But after an invitation to participate on the volunteer anniversary steering committee, Dave brought lots of enthusiasm and ideas to the committee to commemorate the 15th anniversary of CCF. The idea of the Journey of Hope was born. Dave and Linda have worked tirelessly to plan and execute a six-week 15,000-mile road trip, traveling to all 48 contiguous states, working to spread awareness, express gratitude, and fundraise for cholangiocarcinoma research. Dave and Linda want to inspire hope as they travel to 15 towns named Hope, visit patients, caregivers, providers, researchers, and industry partners.
Only days before their scheduled start to the trip, they watched a past video of Sarah’s volunteer work critical to the Mutations Matter initiative, which they had never before seen. In the video, Sarah speaks of how she wanted to share the voice of her journey to instill hope for others with cholangiocarcinoma. The particular words Sarah used, “journey” and “hope,” now resonated with them in an exceptionally poignant way. Unbeknownst to her parents, years prior, Sarah had begun their Journey of Hope, and now together, Dave and Linda have picked up the torch and continue moving it ahead. “Sarah would be thrilled,” shares Linda. This is a remarkable volunteer undertaking and a historic event. It is a great honor and privilege to recognize Dave and Linda Fleischer as Volunteers of the Month.
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Congratulations to Janice and Dean Meyer, who hosted their 2nd annual Quack Out Cholangio 5k Run/Walk to Crush Bile Duct Cancer on May 15th in Newark, Delaware. The event was in-person with a virtual component for those who could not attend. Over 500 runners/walkers participated, including many Cholangiocarcinoma Warriors, friends, and family from across the US, including Delaware, Illinois, Louisiana, New Jersey, New York, Ohio, Texas, and Virginia. Those attending the Delaware event enjoyed a post-race celebration that included lunch and refreshments from Ennis BBQ, Midnight Oil
Brewing Company, and others, as well as entertainment by Betty and the Bullet. Event sponsors included Incyte, Ernst and Young, KMPG, and many generous local businesses. Event proceeds are estimated to be more than $60,000.
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15,000 Mile Journey of Hope Begins! |
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Loving Parents Plan a Road Trip in Memory of Their Daughter Who Passed Away From Cholangiocarcinoma |
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Dave and Lind Fleischer, volunteers and supporters of the Cholangiocarcinoma Foundation (CCF), plan to spend six weeks driving across the country to raise awareness of the cancer that claimed the life of their daughter, Sarah Bennett. The 15,000 Mile Journey of Hope is part of year-long events commemorating the 15th Anniversary year of CCF with the anniversary theme, including Crystal Clear Hope.
Dave, joined by his wife Linda for part of the trip, is taking this journey in recognition of the anniversary and in memory of daughter Sarah Bennett, who passed away from cca in 2018.
During this road trip, they hope to spread awareness, raise funds for research, and bring hope to patients, caregivers, and others along the way.
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The Journey of Hope begins at the Ken Gaarf dealership in Orem, Utah. Click here to watch ABC 4 Utah's coverage of the event.
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Abbey Sprague and family supply the Journey of Hope with hand painted hope rocks, snacks, and donations. |
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Seattle, Washington and Chicago, Illinois cheer on the Journey of Hope. |
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June Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
June 10th - TransThera
June 23rd - Relay Therapeutics
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Note: This is a great resource for CholangioConnect Mentors to share with either the newly diagnosed or any new mentees. |
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CCF Celebrates FDA Approval of TRUSELTIQ™ |
On behalf of patients and families impacted by cholangiocarcinoma, the Cholangiocarcinoma Foundation (CCF) celebrates the U.S. Food and Drug Administration (FDA) approval of TRUSELTIQ™ (infigratinib) for patients with previously treated locally advanced or metastatic cholangiocarcinoma (CCA) harboring an FGFR2 fusion or rearrangement. TRUSELTIQ™ is an orally administered, ATP-competitive, tyrosine kinase inhibitor of FGFR, developed by QED Therapeutics, an affiliate of BridgeBio Pharma, Inc.
“This is an important milestone for this community and specifically for patients with CCA harboring an FGFR2-fusion,” said Stacie Lindsey, Founder and CEO, CCF. “We want to acknowledge all who participated in this trial and thank them for playing such a critical role. We are hopeful about the potential TRUSELTIQ™ offers people living with this debilitating cancer.
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Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer
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This year the Cholangiocarcinoma Foundation Annual Conference had 1647 attendees, with 31% being cholangiocarcinoma expert physicians and researchers. We focused, with our speakers, on bringing to you the updates in various CCA treatment modalities including, chemotherapy, targeted therapy, immunotherapy, surgery, and local therapy. We also highlighted some critical current research projects that CCF are doing in collaboration with our CCA experts and trusted partners. These included: |
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- CCF collaboration with Washington University in St. Louis to start The Cholangiocarcinoma Genome Sequencing Moonshot Program.
- CCF collaboration with Ciitizen on building the clinical trial finder project, an opportunity for providers and patients to find a suitable clinical trial, and understanding the accurate rate of genomic testing among our patients through real-world oncogenomic testing project.
- CCF collaboration with Emory University and Ciitizen to evaluate the cholangiocarcinoma patients' quality of life.
- The European Network for the Study of Cholangiocarcinoma "ENS-CCA" presented the CCA's natural history from their multicenter European CCA database. Currently, the International Cholangiocarcinoma Research Network is collaborating with the ENS-CCA team to compare our results together.
- Updates were shared regarding ongoing phase I/II and III clinical trials, including the GAP study, phase I and II Zanidatamab trial, FGFR inhibitors, ClarIDHY trial, and many others.
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New York City Marathon News! |
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TeamCCF is excited to announce that CCF is an approved charity for the New York City Marathon. The marathon will be held Sunday, November 7th. If you are interested in joining our team, please reach out to meredith@cholangiocarcinoma.org.
Good luck to our June volunteer fundraisers!
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Jill Blonder will host the first John Blonder Memorial Ride on June 5th.
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Kristen Pempek will run in the Bristol Independence Road Race in Bristol, Rhode Island, on June 26th, honoring her late grandmother, Lou.
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15TH ANNIVERSARY HAPPENINGS |
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"What's Your 15?" Challenge |
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In commemorating CCF's 15th anniversary, CCF pauses to reflect on its beginnings, celebrates the growth, and focuses on the need to create improved research in finding a cure. CCF recently introduced year-long activities and goals in honor of its anniversary. In 2021, CCF will work to fundraise an additional $150,000, specifically for research. You are invited to join us by texting CCFturns15 to 41444. CCF has big goals for 2021, together we know it is possible!
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June's Challenge
#CCFturns15
In light of the 15th year anniversary, CCF plans to celebrate while giving back, particularly with the number 15 in mind. This month we invite you to take 15 minutes and share your cholangiocarcinoma story with us. Email your story to allison.deragon@cholangiocarcinoma.org.
Your voice is needed!
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Watch the video above to learn more about the June challenge. |
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Father's Day is Sunday, June 20th. In honor of our amazing dads, use the promotional code
LOVEDAD
20% off all items
June 6th - June 12th
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Help raise $15,000 for research! |
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Example Bundle of Hope with a New Hampshire theme. |
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15th Anniversary Bundle of Hope
Volunteers
CCF is seeking an additional 20 Bundles of Hope. These bundles will be part of an online auction that begins Sept 18th - Oct 2nd. Your donation can help us raise $150,000 for critically needed research!
Bundles of Hope can be themed boxes such as Game Night, Chocolate Lover, or Outdoor Enthusiast. Learn more here or click here to start your donation form today. |
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John Blonder Memorial Ride
June 5th
"In John’s memory, I want to raise awareness and fund research. I also want at long last (since Covid robbed all his family and friends of the opportunity) to memorialize him in a way that would make him happy. So, I have decided to combine the two –fund raising and memorializing.
We are enthusiastic motorcycle riders, and we love to explore the back roads, mountains, rivers, and lakes of beautiful East Tennessee, our home for the past twelve years. We have one particular day ride that we enjoyed often with family and
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friends, so on the 5th, we will travel the backroads to the Clinch Mountain Overlook, which is also a veteran’s memorial, then on to Angelo’s in the Gap, which is near the Cumberland Gap National Park, and then the final stop will be at Bubba Brew’s on Norris Lake. We realize not everyone rides motorcycles, but everyone with a set of wheels is invited. If you knew John and want to remember him, then you need to join us. If you want to ride for a great cause, then you need to join us." - Jill Blonder |
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The Jacques Dupont Memorial Cholangiocarcinoma Fundraiser
June 21st
The event hosted on June 21st, in loving memory of Dolores Marraffa, will be held at the Atkinson Country Club with a 7:30 am Shotgun Start. $150 per player includes: golf, cart, practice balls, continental breakfast, served buffet lunch, Hole in One Contest, and lots of fun. Registration begins at 6:15 AM
If you are interested in participating, either by
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We are also looking for sponsors- $25 Golf Cart Sponsors and $100 Hole Sponsors.
100% of the profits go to the Cholangiocarcinoma Foundation to raise awareness and fund research with the HOPE of finding a cure for this horrific cancer.
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Bristol Independence Road Race
June 26th
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"As many of you know I lost my grandmother to cancer in April 2020. She was diagnosed with Cholangiocarcinoma in February of that year and she decompensated quickly. Prior to this diagnosis she was unbelievably healthy and often bragged about having to take less medication than me. The speed at which we went from traveling to iceland and aruba together to traveling to oncology appointments was staggering. I think about her every day and can’t believe it has almost been one year since I last hugged her. Without Lou I would not be anything close to who I am today and I would absolutely not be graduating from Yale this year as a PMHNP. She convinced me that I could do anything and I wanted to do something to honor this- so I am running a half marathon in June!
I’ll be running in the Bristol Independence Road Race in Bristol, RI on June 26- I hope you’ll consider supporting me in honor of Lou."
-Kristen Pempek
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Kirsten and Lou share a hug. |
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