15 October 2024

2024 Houston Cholangiocarcinoma Symposium


The 2024 Houston Cholangiocarcinoma Symposium will be held on Friday, December 13, from 9 a.m. to 3 p.m. This event is an opportunity to connect with others affected by cholangiocarcinoma, meet leading experts in the field, and engage in meaningful discussions. 

The event is designed to provide a comprehensive overview of the latest advancements in cholangiocarcinoma treatment and research and give providers, patients, and caregivers an inside look at treatments, advancements, and resources. Attendees can ask questions directly of experts during panel discussions and network with other patients, caregivers, and healthcare professionals.

Details

  • December 13, 2024
  • 9 a.m. – 3 p.m.
  • Onstead Auditorium (3rd Floor)
  • 6767 Bertner Ave, Houston, Texas 77030

Why Attend?

  • Network with providers, experts, and individuals and families who share similar experiences
  • Learn from leading experts about the latest advancements in cholangiocarcinoma treatment.
  • Engage in interactive Q&A sessions and panel discussions
  • Gain insights into both systemic and non-systemic therapies

Join us for a day of education, support, and community. Your participation is crucial in fostering a stronger network for those impacted by cholangiocarcinoma.

The Houston Symposium will be an in-person-only event. To ensure an inclusive experience, translation services will be available. If you require translation assistance, please indicate your needs on the registration form. This will help us accommodate everyone and provide the necessary support during the symposium.

Register for this free event here to ensure your spot.

12 October 2024

Adam Abeshouse dies at 63 from Bile Duct Cancer

Adam Abeshouse's clients joined him at the studio adjacent to his home for a farewell concert. Joshua Bell, first row, from left, Adam Abeshouse, Larisa Martinez and Kevin Puts. And, second row, from left, John-Henry Crawford, Charles Yang, Peter Dugan, Lara Downes, Ranaan Meyer, Garrick Ohlsson, Jeremy Denk, Nicolas Kendall and Simone Dinnerstein. NPR.

Early in 2024, Adam Abeshouse was diagnosed with bile duct cancer, and the disease swiftly metastasized. He was a producer who inspired great love and loyalty with the artists he worked with. Shortly before the end of his life, a dozen of his celebrity clients came together to perform for Abeshouse one last time, in a private concert at his home studio.

"In 2002, Adam Abeshouse founded the Classical Recording Foundation to help artists record music they were passionate about but might not have economic appeal. Because he said, “Recordings are just as important an art form as live performance."

A force that will be missed, but a strong legacy that lives on. RIP, Adam Abeshouse.

07 October 2024

Cholangiocarcinoma Foundation Webinar

 

Mark Yarchoan, MD Johns Hopkins University
Mark Yarchoan, MD
Johns Hopkins University

This webinar will introduce an upcoming clinical trial at Johns Hopkins, led by Drs. Marina Baretti, Nilo Azad, and Mark Yarchoan.

The trial focuses on a therapeutic vaccine designed to boost the effectiveness of standard immunotherapy drugs for cholangiocarcinoma. Dr. Yarchoan will present information about the vaccine and provide a broader overview of how therapeutic cancer vaccines have evolved.


The discussion will cover past challenges, recent breakthroughs (including successes with vaccines in other types of cancer), and how these advancements could shape future cancer treatments.


Thursday, October 10, 2024

4:00pm (EDT)


Register now.

05 September 2024

FDA Grants Orphan Drug Designation to Certepetide in Cholangiocarcinoma

FDA

"Previously, certepetide was granted ODD by the FDA for use as a potential therapeutic option in patients with malignant glioma in August 2023; rare pediatric disease designation in osteosarcoma in March, 2024; and ODD for osteosarcoma in April 2024. Additionally, the agent received orphan drug designation for pancreatic cancer by the European Medicines Agency’s Committee for Orphan Medical Products in October 2023, and fast track designation from the FDA in this disease setting.

"Patients in the first-line cohort will receive 1500 mg of intravenous (IV) durvalumab every 21 days plus 25 mg/m² of IV cisplatin and 1000 mg/m² of IV gemcitabine on day 1 and 8 every 21 days for 8 cycles, then every 28 days for additional cycles. In the second-line cohort, patients will receive FOLFOX (5-fluorouracil, leucovorin, and oxaliplatin) every 14 days. These respective regimens will be administered alongside either placebo or 3.2 mg/kg of IV certepetide as a slow push over 1 minute. The study’s primary end point is the incidence of adverse effects."

Check the article to learn more about this ODD, including citations and footnotes.

03 September 2024

Cholangiocarcinoma Foundation September Support Groups

Cholangiocarcinoma Foundation Logo

The Cholangiocarcinoma Foundation is offering virtual support groups (ZOOM) for September 2024. These support groups allow people who have been impacted by the disease to share personal experiences and learn from others. Participants must register to attend the virtual sessions that may include special guest moderators.

Click Here for more information about the Virtual Support Groups. 

Additional opportunities to connect with the CCF community include:

03 August 2024

 


August is make-a-will month, and no one is less likely to make a will than an American. In recent years, the percentage of Americans with wills has declined. As of 2024, only about 32% of American adults have a will. This represents a notable decrease from previous decades; for example, in 2005, approximately 51% of Americans had a will, and by 2016, this number had dropped to 44%​ (Senior Care Hub)​​ (Haimo Law)​.

The reasons for not having a will vary, but common barriers include procrastination, perceived lack of sufficient assets, and the cost of setting up a will. Specifically, 43% of Americans cite procrastination as the main reason, while 40% feel they do not have enough assets to justify creating a will​ (Senior Care Hub)​.

Despite these barriers, having a will is crucial for ensuring that one's assets are distributed according to their wishes and for avoiding potential legal complications for their heirs. Making a will can provide peace of mind and financial security for loved ones, making National Make-a-Will Month a timely reminder for individuals to consider their estate planning needs.

It's advisable to create a will as soon as you have any significant assets or responsibilities, such as property, investments, children, or dependents. While there's no "right" age to make a will, many experts suggest creating one in your early adulthood, around age 18, when you first acquire assets or have dependents. However, it’s never too late to make a will, and it should be updated regularly to reflect changes in your life circumstances.

Where to Create a Will:

  1. Online Will Services: Websites like LegalZoom, Quicken WillMaker, and Trust & Will offer user-friendly platforms to create legally binding wills.
  2. Law Firms: Hiring an estate planning attorney ensures your will is thorough and complies with state laws.
  3. Do-It-Yourself Will Kits: Available online or at bookstores, these kits guide you through the process of drafting a will.
  4. Local Government Resources: Some local governments offer free or low-cost will-making services, especially for seniors or low-income individuals.

10 Reasons to Make a Will in National Make-A-Will Month

  1. Ensure Your Wishes Are Honored: Creating a will ensures your assets are distributed according to your wishes, rather than being decided by state laws.

  2. Protect Your Loved Ones: A will can provide for your family, including appointing guardians for minor children, which can be crucial in securing their future.

  3. Avoid Lengthy Probate: A clearly defined will can expedite the probate process, reducing the time and expense for your heirs.

  4. Minimize Family Disputes: By clearly outlining your wishes, you can minimize the potential for disputes and conflicts among family members.

  5. Support Charities: A will allows you to leave a legacy by donating to charities or causes you care about, ensuring your philanthropic wishes are honored.

  6. Tax Benefits: Proper estate planning can help minimize estate and inheritance taxes, preserving more of your wealth for your beneficiaries.

  7. Care for Pets: You can designate a caretaker and funds for your pets, ensuring they are well cared for after your passing.

  8. Business Continuity: If you own a business, a will can outline what should happen to it, ensuring its continuity and the protection of your employees and customers.

  9. Peace of Mind: Knowing that your affairs are in order and your loved ones are protected can provide significant peace of mind for you and your family.

  10. Take Advantage of Resources: National Make-A-Will Month often brings awareness, resources, and promotions that can make the process easier and more affordable.

Creating a will is a crucial step in ensuring your legacy and protecting your loved ones. Taking advantage of National Make-A-Will Month is a great opportunity to address this important aspect of life planning. Note that making a will is not a substitute for a trust, and you must have a will even if you do have a trust. I'll cover those issues later.

Photo by Melinda Gimpel on Unsplash

10 July 2024

 It's been a hot minute since I last posted on this site. I apologize for the neglect of nine years. In that time, I had a bowel resection (a stroke in one of the three arteries that attach to the sigmoid colon), my father died of heart disease during the middle of the 2020 pandemic year, and I underwent brain surgery in 2022 to try to "heal" my hemifacial spasms. That latter surgery didn't work, but I have a new neurologist who administers Botox to that left eye and it works like a charm.

So life is good right now. I'm selling a lot of "dead people stuff" on eBay, and donating 10% of sales to the Cholangiocarcinoma Foundation. I feel good about that -- last year, just kicking in, I donated almost $300. This year will be far more.

I'm going to keep going with this topic now since Facebook readership numbers are dwindling (I have a page there which I probably will eliminate). I don't have a clue to what my numbers will be here, but I feel a bit freer to post what I want to post on this format. 

Hope you all have been doing well. Talk soon!

Linda