The Cholangiocarcinoma Foundation's Loose Leaf Notebook

Become a Fan of the Cholangiocarcinoma Foundation

rick@cholangiocarcinoma.org (Rick Pollock) — Wed, 10 Mar 2010 04:31:00 +0000

Hey everybody, thanks for being a part of the Cholangiocarcinoma Foundation family.

As some of you know, last week I was offered a challenge by a member of our discussion group and I accepted it.

The challenge? To get 2,500 fans on our new Facebook page by the end of March.

If we do, then I agreed that I'd become our "Miss Cholangiocarcinoma Pin-up Girl" and subject myself to all of the trappings that would come with that. (Hair/Makeup/the works, whatever she decides. YIKES!)

So click here , sign-in and click on "Become a Fan," then get your friends to join and tell them to get their friends to join, and let's see if we can stop at 2,499? K? Please? :)

Thanks,
Rick Pollock (the web guy)

February is Cholangiocarcinoma Awareness Month

noreply@blogger.com (Dawn Lyon) — Fri, 12 Feb 2010 19:49:00 +0000

This February 14, celebrate love and life while creating awareness for those fighting against bile duct cancer by sending a Tribute eCard.

They are easy to send. And it’s completely FREE.

Click here and use the Tree Tribute Card icon/link.

Choose your card and add a personalized greeting.

Type in the recipient’s email address, and click “enter.” Your card will be sent immediately.

Together, we can raise awareness and make a difference.

More ways to show your support:

Wear a cholangiocarcinoma wristband. Order now.

Visit our Online Store for dozens of ways to tell the world about this devastating disease.

Make a Donation. 100% of your tax-deductible gift saves lives.

Spotlight on Clinical Trials: Request for Participation

noreply@blogger.com (Sara Hinkley) — Wed, 10 Feb 2010 17:47:00 +0000

The Cholangiocarcinoma Foundation is pleased to announce that it will host an educational series, entitled “Spotlight on Clinical Trials,” that spotlights clinical trials focused on cholangiocarcinoma. This web-based educational series provides the cholangiocarcinoma community with awareness and education of available cholangiocarcinoma clinical trials around the world. The educational series launches on 19 February 2010 at 11:00 a.m. EST with a Clinical Trials 101 webinar, featuring guest speaker Dr. Jack Welch of the National Cancer Institute. Thereafter, the Spotlight on Clinical Trials will provide focused webinars spotlighting individual clinical trials directed to cholangiocarcinoma.

Click here to reserve your seat in our Clinical Trials 101 Webinar.

The Cholangiocarcinoma Foundation invites interested sponsors of active and completed cholangiocarcinoma clinical trials to contact us if you wish for your clinical trial to be featured in one of the Spotlight on Clinical Trials webinars. To participate in this series of webinars, The Cholangiocarcinoma Foundation requests that interested sponsors prepare educational materials that are compatible with a web-based seminar, and serve as guest speaker for the webinar. The primary audience for this education series is the patient and caregiver community. Interested parties should note that participation in the Spotlight on Clinical Trials educational series requires that the materials and discussion be recorded so that it can be published for future viewing on The Cholangiocarcinoma Foundation and the CanLiv: The Hepatobiliary Cancers websites. To enquire about participation in one of the webinars, please contact Sara Hinkley at sara.hinkley@cholangiocarcinoma.org.

In Action with The Cholangiocarcinoma Foundation

noreply@blogger.com (Dawn Lyon) — Fri, 29 Jan 2010 21:43:00 +0000

As a recent volunteer for The Cholangiocarcinoma Foundation, I was eager to help out in any way—stuffing envelopes, making calls or passing out brochures. Instead, I was invited to take part in Partnering for Cures in New York City, an amazing collaboration between philanthropic foundations, medical researchers and industry in an effort improve research. I was thrilled to participate in such an important event. The two-day conference included hundreds of nonprofit organizations willing to contribute their learning in hopes to improve others efforts. It offered presentations from a variety of organizations, such as the National Pancreatic Cancer Foundation, panel discussions and breakout sessions for partnership. The inspiring messages of accomplishment in short-time frames along with the distribution of data, ideas, successes and pitfalls shared by these other organizations gave me such hope that The Cholangiocarcinoma Foundation can achieve research breakthroughs (and quickly). I left with a greater commitment to help to find a cure. I encourage anyone who has the desire and time to volunteer. The experience is not only fulfilling but enlightening and educational.

Santa Fe Gastrointestinal Cancer Conference

noreply@blogger.com (Sara Hinkley) — Mon, 25 Jan 2010 21:38:00 +0000

In December, David Windle represented The Cholangiocarcinoma Foundation at the Sante Fe Gastrointestinal Cancers Conference. The University of New Mexico Cancer Center Gastrointestinal Oncology Section and the University of New Mexico Office of Continuing Education organize this annual conference, with a goal of "disseminating the most updated information regarding the multidisciplinary management of Gastrointestinal Cancers." Gastrointestinal cancers include cancers of the stomach, liver, gall bladder, bile ducts, and small and large intestines.

The conference featured many exciting speakers from leading cancer centers across the United States. Specific to bile duct cancer, discussions included the epidemiology* of biliary tree cancers, endoscopic management of biliary obstructions, percutaneous** management of biliary obstructions, and clinical presentation and treatment of biliary tree cancers.

In addition to attending the multiple sessions specific to bile duct cancer, David had the opportunity to speak with the distinguished speakers, including Dr. Manal Hassan from MD Anderson Cancer Center, Dr. Ghassan Abou-Alfa and Dr. Eileen O'Reilly from Sloan-Kettering, Dr. Hashem B. El-Serag from Baylor College of Medicine in Houston, Texas, and Dr. Lewis Roberts from the Mayo Clinic in Rochester, Minnesota. David indicated that the dedicated speakers and attendees showed much compassion, graciousness, and an overall excitement that we are supporting their efforts.

* Epidemiology is the study of the cause, distribution, and control of disease in population of humans

** Percutaneous is a surgical term that pertains to procedures performed through the skin, usually by a needle

Clinical Trials 101

noreply@blogger.com (Sara Hinkley) — Mon, 25 Jan 2010 04:33:00 +0000

Have you found the clinical trial process confusing? Or are you looking for additional information on the available bile duct cancer clinical trials? If so, then we have an initiative in 2010 that may help! The Cholangiocarcinoma Foundation will host an educational series on clinical trials, including spotlights on bile duct cancer-specific clinical trials.

We kick off this educational series with a Clinical Trials 101 webinar. We are very excited to announce that Dr. Jack Welch from the National Cancer Institute (NCI) will join us to discuss some clinical trial basics, and answer your questions. Please mark your calendars for February 19, 2010 at 11:00 a.m. Eastern Standard Time, where Dr. Welch will lead us in this interactive webinar. We encourage the community to join us, and come prepared to ask any questions that you have about clinical trials. In the event that you cannot attend the webinar, it will be recorded and added to our website for future reference.

Future webinars will spotlight active clinical trials available to the bile duct cancer community. If you know of a clinical trial that you would like to see featured, please contact Sara Hinkley at sara.hinkley@cholangiocarcinoma.org.

Partnering for Cures

noreply@blogger.com (Sara Hinkley) — Wed, 30 Dec 2009 00:22:00 +0000

In December, The Cholangiocarcinoma Foundation attended the inaugural Partnering for Cures meeting in New York City. As indicated on the Partnering for Cures website, this innovative meeting brought together philanthropy, medical research foundations, government, the biotechnology industry, and the pharmaceutical industry in an effort to create strategic collaborations key to the development of new medical solutions for diseases.

Despite the investment of extensive resources, numerous diseases lack cures or even meaningful medical treatments. Further underscoring the lack of advancement is the currently established evidenced-based research process that is estimated to take approximately 17 years. The Partnering for Cures meeting provided the forum to unite the key stakeholders, challenging them to design new solutions that will cut this time period, and lead to faster cures.

While we approached this meeting with two goals in mind: (1) evaluate how other orphan organizations leveraged their limited resources to foster innovation, and (2) establish relationships with philanthropists, biotechnology and pharmaceutical industries, government, and medical research foundations; we walked away from the meeting learning so much more.

Key to the entire meeting: Collaboration. This has always been a key component of our mission, but our time at the conference opened our thinking, and realigned our collaborative efforts. Michael Milken, chairman of Faster Cures/The Center for Accelerating Medical Solutions, poignantly questioned why there are so many foundations supporting breast cancer, all working independently of each other. One collective voice in breast cancer would be louder and stronger, thereby accelerating advancements in medicine for that disease.

The Cholangiocarcinoma Foundation is already moving in this direction, evidenced by our ongoing collaboration with CanLiv: The Hepatobiliary Cancers Foundation. In pursuit of the CURE of bile duct cancer, both The Cholangiocarcinoma Foundation and CanLiv are committed to sharing resources where possible. Further, we are actively engaged in bringing together key stakeholders in the bile duct cancer and gallbladder cancer communities in a symposium in May 2010. Throughout the Partnering for Cures meeting, we met with the representative from CanLiv, Dr. Melanie Thomas, outlining partnering opportunities that lead to our common goal of the CURE. Our discussions yielded exciting developments for the May symposium, as well as potential approaches for establishing collaboration among bile duct cancer researchers.

In an effort to share innovative programs, the Partnering for Cures meeting invited many medical research foundations to present their novel approaches for bridging research across medical institutions and pharmaceutical and biotechnology industries. The Multiple Myeloma Research Foundation shared their approach, a multi-institutional research consortium that includes approximately 13 medical institutions, such as The Mayo Clinic Cancer Center, Dana-Farber Cancer Institute, H. Lee Moffitt Cancer Center & Research Institute, and the University of California San Francisco. In the past 5 years, this consortium established a data bank, tissue bank, and genomics initiative that are shared among the member institutions. The Multiple Myeloma Research Consortium is just one of the many exemplary programs featured during the Partnering for Cures meeting, all providing excellent models for advancing science through collaboration.

In addition to collaboration, the Partnering for Cures meeting focused much attention on personalized medicine. Historically, disease treatment has been driven by the location of the disease. In the case of bile duct cancer, treatments are driven by whether the cancer is distal, Klatskin, or intrahepatic bile duct cancer. Personalized medicine is a complete change in how treatment is determined for a patient. Personalized medicine focuses on genomic and molecular data to determine the treatment that is most appropriate for the individual patient. While this focus is exciting, it requires that we develop new processes for evaluating research in this area. Accordingly, the Partnering for Cures meeting spent several sessions investigating better processes for evaluating personalized medicine.

Overall, we felt that the meeting was highly successful in both content and connections. We are extremely excited to begin implementing the new initiatives derived from this meeting, and will provide updates throughout 2010.

Help find the CURE for Cholangiocarcinoma

noreply@blogger.com (The Cholangiocarcinoma Foundation) — Mon, 28 Dec 2009 23:50:00 +0000

In this season of giving, please make a year-end donation to the Cholangiocarcinoma Foundation.

Because you have been kind enough to support us this past year, we would like to ask you to continue contributing to the fight against Bile Duct cancer (Cholangiocarcinoma) as we begin a new chapter in 2010.

Your gift - whatever its size - is a valuable investment. It provides the means for us to take significant action.

Your Gift Makes the Difference

Since our founding in 2006, we have counted on the support of caring and concerned individuals like you to help us advocate for patients, provide ongoing support, and educate those who do not yet understand. Your contribution makes possible the greatest gift of all: the gift of hope.

In 2010, we will focus on funding multiple Young Investigator Research Grants to find a cure for those affected by bile duct cancer. Your tax-deductible gift will be directly used to support that research.

Our work to advance the delivery of therapies and empower the bile duct cancer community is more urgent than ever. In these difficult economic times, supporting a cause that truly matters becomes even more significant.

Together, we can bring attention and critical dollars to this under-funded disease. Together, we can keep fighting.

We are profoundly grateful for your support, and wish you a joyous and fulfilling holiday season.