- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS AND WEBINARS
- SCIENTIFIC UPDATE
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- TEAMCCF UPDATE
- SURVIVOR STORY
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- SOCIAL MEDIA INFLUENCERS
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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. |
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Alicia volunteers in memory of her mother, Lisa Tuszynski. |
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Alicia enjoys family time. |
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Married for eight years with two children under age six, Alicia Thomas still finds time to volunteer. She has lived in Indiana for 18 years and graduated from the University of Indianapolis with a degree in Public Relations and Communications. Her hobbies have changed during the pandemic as she now prioritizes and loves nature walks, bike rides, puzzles, disconnecting from technology, and unifying her family. Alicia also loves to travel and take advantage of being just a short distance from Lake Michigan.
In April of 2019, Alicia’s mother, Lisa Tuszynski, experienced the loss of her mother. It was a difficult time. Her grief and stress, along with a job change, explained her appetite changes, aches, and pains. Yet five months later, doubled-over in pain, Lisa was in the emergency room. Her scans and results eventually led to an urgent appointment with a previous oncologist. After research, a second opinion, further tests, and a trip to a major cancer center, Lisa and Alicia learned of cholangiocarcinoma. Lisa was always finding the positive in life. With her cancer taking a serious turn at the end of October, she and Alicia began investigating how her body could advance research. In talking about her final wishes and desires, Dr. Paul Helft shared information about the Cholangiocarcinoma Foundation. Sadly, Lisa passed away in November of the same year. Her body was donated to Indiana University, where it was placed in a rare cancer class for two years and used to educate future physicians.
Alicia wanted to stay connected with her mother by giving back. She found notes in her phone after her mother’s passing about CCF. Once she began the volunteer process and spoke with Melinda Bachini, CCF’s Director of Advocacy, she felt an instant connection of energy, strength, and trust. Alicia quickly became engaged as a volunteer. She joined a CARE Team and began planning and hosting the Wellness for Life program launched in 2021. Alicia has also served as a Turkey Trot fundraising and administrative volunteer, as well as a Thank-A-Thon volunteer. Alicia said she volunteers because she hopes to be a light for others who are struggling, enduring emotional pain, and in a dark place. She wants to do the right thing and facilitate research to find the answers the community wants for the treatment of cholangiocarcinoma. It is a great pleasure to honor and recognize Alicia Thomas as Volunteer of the Month.
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Congratulations to this year’s President Volunteer Service Award Winners.
Pictured: Alie Plouff, George Riddle, Heidi Rhea, Steven West, Linda Fleischer, Dave Fleischer, Katie Glenn and Toni Pham.
Not pictured: Barbara Dupont, John McDonald, Marsha Goldstein, Robin McCallister, Tom Leitzke, Lisa Craine, Patricia Maxin and Carl Scheitrum.
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$550,000 in research grants awarded by the Cholangiocarcinoma Foundation to early-career investigators at renowned institutions |
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"We are thrilled to announce the 11 Research Fellowship Grants being funded in 2022 by CCF," said Katie Kelley, MD, UCSF Medical Center and Chair of the grants review committee. "These grants will launch a broad range of cutting-edge research projects spanning the basic to clinical research continuum. We believe these projects and the young investigators leading them will produce important breakthroughs for the cholangiocarcinoma community." |
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March Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 p.m. MST, on Thursdays
March 10th- Eisai
March 24th- Relay Tx - NOTE: 5 PM ET
March 31st- Ambrx
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Note: This is a great resource for CholangioConnect Mentors to share with either newly diagnosed patients or any new mentees. |
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SCIENTIFIC AND ADVOCACY UPDATES |
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Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer
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Carl Scheitrum spent more than 1,000 volunteer hours in 2021 updating the International Cholangiocarcinoma Patient registry.
Carl's information technology experience played a crucial role in this project. He helped the CCF team explore the best approaches to make this registry platform more patient-friendly. He also focused on improving the registry output, so researchers can use de-identified patient data to understand the natural history of cholangiocarcinoma that will help find a cure for this disease.
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TeamCCF has one bib remaining for the Chicago Marathon. Bibs for the New York City Marathon should be available by mid-March.
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Ellyn and her three sons. |
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Long-Term Survivor
Ellyn Goodrich
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I believe in science and for me, that has provided a lot of hope. Knowledge is power and I felt hope when I learned I had the FGFR mutation and all of the information that was shared on my molecular profiling report. I devoured every website, clinical trial database, and daily Google Scholar Alerts about this disease. |
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See the new items this month including a Tree of Life Necklace, Zip-Up Hoodie, Short-Sleeved Shirts, Conference T-Shirt and Coffee Mug. |
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Research Advocates serve to link patients to scientific research to promote education and bring about change.
Key Responsibilities:
- Help patients understand medical research and scientific concepts;
- Keep current on research and clinical trials available with ongoing required training and monthly meeting attendance; and
- Bring patient perspective on research activities to scientific advisory boards and committees.
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CholangioConnect Mentors offer encouragement. Mentors help others through difficult periods of diagnosis, treatment, and when needed, palliative care which can be extremely stressful and confusing. Mentors are cholangiocarcinoma survivors, patients, caregivers, family members or friends of cholangiocarcinoma patients. The service is free and is intended to offer support, not to give medical advice or recommendations. Any information shared between mentors and patients concerning treatments, medications or therapies should be discussed with a physician. |
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Light It Green For CCA 2022
Call For Photos
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Please upload your Light It Green For CCA photos to the website here.
To date, CCF has received more than 105 photos from volunteers around the globe. Awareness matters.
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CCF invites the entire volunteer community to share the 21 Miles of Hope event on social media platforms. By sharing this event with your audience, you expand the reach of the Foundation exponentially. |
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CCF invites you to talk to your employer and determine if fundraising dollars can be matched for this campaign. |
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