- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS
- SCIENTIFIC AND ADVOCACY UPDATES
- TEAMCCF UPDATE
|
|
- 15th ANNIVERSARY HAPPENINGS
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- 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. |
|
Christina works to honor Matt's memory as she plans A Matter of Hope.
|
|
Christina Sgambato loves to travel. She is originally from Massachusetts but has lived and traveled extensively up and down the East Coast and now calls Baltimore home. As a former dancer, she enjoys barre classes, which she recently rediscovered, and loves leading an active lifestyle. Christina also loves to write. Blogging not only allows her to process her feelings better, but she has also witnessed the good it can do for others.
Christina is a fundraising volunteer and advocate. She created an event called A Matter of Hope in loving memory of her late husband, Matt. Christina knew she wanted to do something to honor Matt as she watched how hard he fought to overcome and how courageous he was. She created a summertime party-type event because she wanted to keep Matt close with her in the process. Her entire event is something Matt would have loved to be a part of, and she knows he is cheering her on as she works to make things better for other cholangiocarcinoma patients. She first approached her sister-in-law with the event idea, and she fully embraced the concept immediately. Next, she formed a core committee group to begin planning. The group often reflected on what Matt would have wanted, hence the music, corn hole, and tank top sales. With the emergence of COVID-19, Christina and the committee quickly pivoted, as they knew large summer gatherings were not possible. They created several unique virtual opportunities and mini-hub events for smaller groups to participate. Christina's professional marketing expertise contributed to the event's success. She shares how important it is to find ways for family and friends to get involved and not fear asking for help. People generally want to help, yet they don't always know how to go about it. She also shares how important it is to give others simple choices for involvement, from a t-shirt purchase to ticket donations and time. Every effort makes a difference.
Matt had received a teenage diagnosis of Crohn's disease, which initially is what he suspected was returning as a flare-up about a year before his passing. Unfortunately, the Crohn's diagnosis made him ineligible for many clinical trials. Christina is now adamant that patients have improved access to clinical trials and fully supports research funding as she knows it is critical to developing better treatment options. Her second annual event is planned for August 2021, Matt's birthday month. It is a great honor and privilege to recognize Christina as Volunteer of the Month.
|
|
|
|
CholangioConnect Milestone |
July 2021 marked the creation of the 500th mentor/mentee relationship with CholangioConnect since its beginning in July of 2017. The program continues to grow as 128 mentor relationships were created in 2020, and to date this year 110 mentor/mentee relationships have already been formed.
A very special thank you to all those volunteers who have served as patient or caregiver mentors. The personal connection they offer is a priceless gift of support!
|
|
Thanks for helping us move for the cure! |
|
The 2nd Annual Moving for the Cure was amazing!
We had 550 participants and raised more than $76,000 through peer-to-peer fundraising with 854 donors, and received an additional $20,000 in sponsorships. Thank you for your continued support and enthusiasm.
|
|
Jacques Dupont Memorial
Golf Tournament Update
|
Monday, June 21st was a great day for the Jacques Dupont Memorial Golf Tournament in loving memory of Delores Marraffa at the Atkinson Country Club in Atkinson, NH. Jacques lost his battle with CCA in 2007 and Dolores lost her battle in December 2020. Dolores' son and daughter-in-law, Dominic & Kellie Marraffa, have been on my Annual Jacques Dupont Memorial Benefit Committee since its inception in 2011.
The 7:30 AM shotgun start was very impressive as the 40 golf carts took off for the course. The temperature in New Hampshire hit 90 degrees that day, but there was not one complaint from the golfers, volunteers, or committee members. There was a $10,000 Cash Prize Hole in One contest, which was not won, but one golfer came very close.
The 18th hole was a lot of fun, it was a Dart Board Golf Challenge. Each golfer could pay $10 and
get 3 shots using plastic velcro golf balls, for each ball that hit the target the numbers were added up and as a team, if the number was higher than 90, the team could take 1 point off their game - over 120 total, 2 points could be taken off. The golfer with the highest individual points won a 7-night vacation worth $1,500. This was a great activity, the monies raised were split with the company, as we raised $440 for CCF with this challenge. We had 80 golfers, who were very generous and a fun time was had by all. A total of $8,000 was raised, which is AWESOME.
With extreme gratitude,
Barbara Dupont
|
|
|
|
|
August Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
|
2:00 pm MST, on Thursdays
Aug 12th - TBD
Aug 26th - TBD
|
|
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) members are working together to expand this network and collaborate with other leaders in the field. Thus, we collaborate with the European Network for the Study of Cholangiocarcinoma (ENS-CCA) on many projects, including organizing monthly Clinical and Translational Educational Seminars Series, Early- |
|
|
Career Mentorship Programs, and Short Mission Scholarships. These efforts will enable CCF to expand the cholangiocarcinoma community by bringing experts from various areas of cancer research, cell biology, genomics, Artificial Intelligence, and other high yield research areas into the cholangiocarcinoma research world. That will help the CCF achieve our goal of finding a cure and improving the quality of life for those affected by cholangiocarcinoma. |
|
Our dedicated Research Advocate Team has been busy as CCF continues to grow and expand its outreach in research. We are currently working on a nutritional guide with the help of experts in the field and our advocates sharing their patient and caregiver perspectives. The Patient Registry is being updated thanks to the dedication of our volunteers. The new registry will be available in the fall of 2021.
George Riddle and Robin McCallister were selected from a prestigious group of applicants to participate in the ASCO Conquer Cancer Consumer Grant Reviewer training. The training included dedicated sessions in precision medicine oncology, aspects of cancer research including funding, method and clinical trial basics, ethics /patient protections, statistics, the drug approval process, and the use of communication tools to enhance the role of an advocate in group settings. The course extended across three months and concluded with a grant review simulation exercise.
Melinda Bachini and Lisa Craine represented CCF as part of the AACR’s Scientist-Survivor Program. The program provides an opportunity for patient advocates to learn about cancer research and to interact with scientists, doctors, health professionals, and other advocates. These groups come together to discuss the latest findings in cancer research, foster collaborative interdisciplinary partnerships and promote progress in new research in cancer health disparities. The five-day conference included presentations from researchers, medical professionals, and the FDA. The week concluded with each participant presenting at The Poster Session and presenting their group research project on Big Data and Immunotherapy. Melinda explained her story and was part of the speaker forum on Immuno- Oncology.
The team has also been hard at work reviewing and editing patient literature for numerous companies and organizations.
CCF is delighted to welcome Emma Mach as Advocacy Coordinator. Emma will work with Melinda in leading our Research Advocates in continuous learning and growth.
|
|
Carter rides with support of friends Ed Senn (left) and Tom Synhorst (right).
|
|
Congratulations to Kellie Tyler who participated in the Lake Placid Ironman on July 25th in memory of her mom, Renee, who passed away in May of 2020. Covid put a pause on her event but Kellie was patient and crushed the Ironman. Thank you for your support, Kellie.
Carter Newton of Galena, Illinois participated in RAGBRAI this month. RAGBRAI is a week-long bike ride across Iowa. Carter's wife has been dealing with cholangiocarcinoma since July of 2020. Carter set out to fundraise for CCF "to raise awareness of this little-known disease as well as raise funds for the Cholangiocarcinoma Foundation so others may benefit from your generosity." To date, Carter has raised $27,083.23. Congratulations, Carter!
|
|
Enroll for the NY City Marathon
|
|
|
15TH ANNIVERSARY HAPPENINGS |
|
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!
|
|
SAVE THE DATES
September 24th - October 2nd
Need a vacation? Love to holiday shop? Like Christmas ornaments? Mark your calendar, as the CCF Bidding for the Cure event is right around the corner. Trips to a beautiful Florida beach, a ski adventure, and Charleston, SC are just a few of the incredible items that have already been donated. There is something for everyone. Every dollar raised goes straight to fund research for finding a cure.
|
|
Make sure to check out the Awareness Store. The surplus of Moving for the Cure shirts, in adult and kids sizes, are there. We also still have a few Journey of Hope shirts. Remember, all proceeds from the store support patient programming
|
|
Administrative Website Support |
CCF Staff is seeking administrative volunteers to review and proof website pages and updates. This assignment is a remote task that requires approximately 2-4 hours per month. Email cindy@cholangiocarcinoma.org to volunteer today. |
|
|
Light It Green For CC Volunteers |
CCF Staff is seeking volunteers to support the Light It Green For CC campaign in February of 2022. Visit our website here to learn more about this project or email cindy@cholangiocarcinoma.org to get involved. |
|
|
Michelle's Hot Peeps Beat CC
August 14th
Taylor, TX or Virtually
|
This 4th annual, IN-PERSON or virtual, race is accepting registrations NOW! Packet and shirt pick-up begins at 6:30 am with the chipped race starting promptly 7:30 am.
Sign-up and mark the date on your calendar. Kona Ice will again provide free snow cones and Michael Craig will supply music.
100% of the net proceeds will help the CCF, the leading global CC nonprofit, to fund research to find a cure and improve the quality of life for CCA patients. This is a family-friendly event hosted by Michelle’s family and friends to celebrate life, family, and wellness. In 2019, participation almost doubled from 2018 and the race was featured on KEYE TV in Austin.
|
|
|
|
|
A Matter of Hope
August 14th
Baltimore, MD or Virtually
|
The summer party to end all parties! We’re coming together for the summer’s most epic party to raise money for The Cholangiocarcinoma Foundation in honor of one of the greatest men to walk this earth, Matt Sgambato.
On Christmas Eve, 2019 Matt, at the age of 35, passed away from a rare, aggressive form of cancer, Cholangiocarcinoma. Because Cholangiocarcinoma is rare, it lacks the awareness and funding necessary to conduct clinical trials and research that provide treatment options and hope for patients inflicted by this devestating disease. In partnership with the Cholangiocarcinoma Foundation, we’re going to change that narrative.
|
|
In it’s inauguaral year, A Matter of Hope raised over $20,000 for the Cholangiocarcinoma Foundation. With your help, we will surpass that total this year! Join us in raising money in one of Matt’s favorite ways: with live music, food, drinks, games, and connecting with each other on his favorite day of the week…Saturday!
While our main event will be in Baltimore, we will be operating under a Hybrid format, meaning we’ll have virtual connectivity to different hubs, both large and small, across the globe! So whether you can join us in Baltimore or from your own city/town/home, it will be…LEGENDARY.
|
|
|
|
|
|
|
