cholangiocarcinoma.org :: our loose leaf notebook

Riding in honor of Nick

2012-01-06T14:36:00.008-07:00

For the second year Corinne Croce will be participating in the Cycle for Survival in honor of her brother Nick. Nick was diagnosed with cholangiocarcinoma (bile duct cancer) and lost his battle after only eight short months. Inspired by his spirit and selflessness, she raised over $40,000 last year to help in the fight against rare cancer. This year her goal is $50,000.

Let's help support Corinne.

Check out her site and read more about her and her inspiring
brother, by clicking the link below.
We ride for Nick, We ride for Life, We ride together to pull each other up.

We thank Corinne for her dedication and support in raising funds and awareness of rare cancers, especially bile duct cancer.

Santa Is Calling

2011-12-21T18:37:00.002-07:00

With Christmas just a few days away we wanted to share this link: http://santaiscalling.blogspot.com/

From now through December 24th Santa will be making FREE phone calls to children all around the world! The countdown clock is ticking, and the elves are making their preparations for the big night!

It only requires three simple steps:
1. Fill out the form at least two days in advance!
2. Santa will email you to confirm your time and collect some TOP SECRET info...
3. Reply to Santa's email as soon as possible!

They are also taking donations to benefit The Cholangiocarcinoma Foundation which we greatly appreciate.

Try it out.

Happy Holidays!

Something for Sue

2011-12-05T19:53:00.002-07:00

For anyone in the Indianapolis, Indiana there will be a bowling fundraiser to benefit The Cholangiocarcinoma Foundation on April 14, 2012 in support of Susan Crago. Details are below:

WHEN: Saturday, April 14TH at 1:00 pm
WHERE: Woodland Bowling, 3421 E. 96TH Street, Indianapolis

4 people per team - $100 per team
(You can sign up as an individual too)
Includes 3 games and shoe rental
50/50 Raffle, Door Prizes, Auction items
Live music by Gypsy Revival

We'd like thank Sue and everyone for their support.
If you have any questions about donating and/or bowling please email:
somethingforsue2012@gmail.com or visit:
www.firstgiving.com/fundraiser/susancrago/somethingforsue

Thanks again Sue!

Thomas E. Whitten, Jr. Memorial Golf Outing and Cookout

2011-11-02T10:41:00.003-06:00

Congratulations to the Whitten Family and everyone involved in the Fourth Annual Thomas E. Whitten, Jr. Memorial Golf Outing and Cookout. The event which took place on September 24th was a great success. Not only did everyone have a great time, they raised over $14,000 for cholangiocarcinoma (bile duct cancer) research. Thanks to Doug and everyone involved for their continuing support. Check out the winning team photo.

2011 Updates in Bile Duct Cancer and Other Biliary Tract Diseases

2011-07-21T17:41:00.017-06:00

As part of our ongoing educational series, The Cholangiocarcinoma Foundation invites you to join us for two upcoming web-based seminars that feature highlights of biliary tract research from a few of the annual meetings held in 2011.

We kick off August with a review of cholangiocarcinoma research. Dr. Ghassan K. Abou-Alfa from Memorial Sloan-Kettering Cancer Center will lead the discussion, which will include noteworthy updates from the 2011 Gastrointestinal Cancers Symposium and the 2011 American Society for Clinical Oncology Annual Meeting. A question and answer session will follow Dr. Abou-Alfa’s remarks.

Please join us: August 3, 2011 – 3:00 p.m. Eastern Daylight Savings Time (US)

Click here to register.

Update: If you missed it, you can watch it here: http://vimeo.com/27263234

At the end of August, The Cholangiocarcinoma Foundation, in partnership with the Primary Schlerosing Cholangitis Foundation, will host a webinar focused on biliary tract diseases. Dr. Sharon DeMorrow, PhD, from the Texas A&M Health Science Center will lead this discussion, which will include noteworthy updates from the 2011 Digestive Disease Week Annual Meeting. A question and answer session will also follow Dr. DeMorrow's remarks.

Please join us: August 30, 2011 - 12:00 p.m. Easter Daylight Savings Time (US)

Click here to register.

Update: If you missed it, you can watch it here: http://vimeo.com/28364591

Please keep an eye on our calendar. Future webinars will spotlight updates on treatment options, as well as highlight active clinical trials available to the bile duct cancer community. If you know of a clinical trial or discussion topic that you would like to see featured, please contact Sara Hinkley at sara.hinkley@cholangiocarcinoma.org.

Tee Off For Hope

2011-06-23T19:37:00.003-06:00

We just received notice that the Fourth Annual Thomas E. Whitten, Jr. Memoral Golf Outing and Cookout is taking place on September 24. Thanks to Doug and everyone involved for their continuing support. We'll post more details as the event nears.

NCI Cancer Bulletin

2011-06-23T19:22:00.006-06:00

More press for The Chloangiocarcinoma Foundation - this time in the NCI Cancer Bulletin. Check out the article, "Cancer Advocates at ASCO: Connecting for a Cause". In the section, "Down in the Hall", our very own Marion Schwartz, Director of Advocacy was quoted. Way to go Marion! Good job promoting the foundation and creating awarenss of bile duct cancer. Read the whole article at the link below.

To read "Cancer Advocates at ASCO: Connecting for a Cause", click here.

The Cholangiocarcinoma Foundation on OncUView TV

2011-06-23T08:27:00.008-06:00

View the link below to see The Cholangiocarinoma Foundation President, Sara Hinkley, discuss the foundation and bile duct cancer at ASCO 2011. Great job Sara!

Watch The Cholangiocarinoma Foundation President, Sara Hinkley, on OncUView TV.

An Outer SpaCCe Party/Fundraiser

2011-06-22T15:58:00.002-06:00

In June 2010, my mother was diagnosed with cholangiocarcinoma (CC) at the age of 56. This news devastated my family and I, my mother was completely healthy until that point. Throughout her care it became increasingly clear that cholangiocarcinoma continues to perplex and frustrate the medical community, and requires further intensive research.

When I told family and friends about my mother's illness, I realized how little the general community knew about CC and that raising awareness was a pivotal step in fighting this life-threatening disease. To that end, some friends and I decided to hold a fundraising event to collect donations and raise awareness. In honour of my mother, a vibrant and outgoing woman who enjoys organizing social events in our community, we decided to give our fundraiser a theme...an outer spaCCe party! We invited our guests to join us into outer space to find a cure for cholangiocarcinoma...the party was a great success and out of this world!

Nikkie Randhawa
Vancouver, Canada

2011 Bile Duct Cancer Walk Was a Great Success!

2011-04-30T21:52:00.017-06:00

On Saturday, April 16, 2011, numerous bile duct cancer survivors and caregivers gathered in Mountain View, California for the annual Bile Duct Cancer Walk. The Bile Duct Cancer Walk traversed 5 kilometers in beautiful Shoreline Park, and was a great success!

The Bile Duct Cancer Walk began in 2008 after then-4th grader Denny Cmiel had an idea of how he could help after his aunt Levan Gray was diagnosed with bile duct cancer. Denny, along with his mom, Lynn Cmiel, organized the first bile duct cancer walk in honor of Levan Gray and Paul Ernst. Since 2008, this event has grown tremendously and resulted in thousands of dollars being donated to Johns Hopkins for their research in biliary tract cancers. The efforts of the family and friends of Levan Gray have also inspired other families across the US to walk on behalf of their loved ones, resulting in tandem walks being held this year in Sarasota, Florida; Oconomowoc, Washington; Temecula, California; and Ivoryton, Connecticut.

The event also brought together members of the online community here at www.cholangiocarcinoma.org. Marion Schwartz, Director of Advocacy at The Cholangiocarcinoma Foundation, attended and commented that "words cannot describe the powerful feelings we experience with coming face to face with someone we communicate with via our discussion board. With much surprise I met up with Barbara Hartley [who is a cholangiocarcinoma survivor since 2002] and her wonderful husband. It was absolutely terrific."

Denny's mom, Joyce Cmeil, provided a moving speech before the walk, thanking everyone for joining in the efforts and welcoming The Cholangiocarcinoma Foundation. The ongoing communications and common efforts between the Bile Duct Cancer Walk and The Cholangiocarcinoma Foundation is inspiring. Marion Schwartz further commented that "when leaving the event, I noticed that several people proudly wore the cholangiocarcinoma.org wristbands, which I believe reenforces our commitment of joining together in the quest of supporting research in order to find a cure for this cancer."

Full details about the Bile Duct Cancer Walk can be found at www.bileductcancerwalk.org. Please visit the site to find details for the next walk, April 2012 in Mountain View, California, or to enquire about planning a tandem walk. Through this website you can also register to receive updates for next year's event.

Spotlight Series: 2011 Review of Chemotherapy Treatment in Bile Duct Cancer

2011-03-15T14:20:00.013-06:00

As part of our ongoing educational series, The Cholangiocarcinoma Foundation invites you to join us for the upcoming web-based seminar featuring a review of chemotherapy treatment for bile duct cancer. Dr. Milind Javle from MD Anderson Cancer Center will lead us in this webinar. A question and answer session will follow Dr. Javle's remarks.

Dr. Javle will focus this discussion on the currently available chemotherapy treatments, as well as highlight some emerging treatment options for bile duct cancer. We encourage participants to submit questions in advance to Sara Hinkley at sara.hinkley@cholangiocarcinoma.org.

Please join us: 12 April 2011 at 12:00 p.m. Eastern Daylight Time.

[Click here to register]

Future webinars will spotlight additional bile duct cancer treatments, as well as highlight active clinical trials avialable to the bile duct cancer community. If you know of a clinical trial that you would like to see featured, please forward these requests to Sara Hinkley.

Thank you for your efforts during February Awareness Month!

2011-03-13T17:01:00.010-06:00

We would like to thank everyone for joining us in raising awareness for bile duct cancer during Cholangiocarcinoma Awareness Month in February. Thousands of motivated individuals around the world tweeted, baked cookies, socialized, held fundraisers, and contacted local government in an effort to raise awareness. Throughout the month, The Cholangiocarcinoma Foundation also hosted a series of webcasts, including spotlights on the Young Investigator Award, emotional health, and how to organize a local support group.

The fundraising campaign to support the Young Investigator Award raised over $38,000, and we continue to receive donations. Notably, Connie Croce, Valerie Shivers, and Mark Shivers created The Polar Bear Plunge fundraiser to help raise money and awareness for cholangiocarcinoma. This fundraiser was a local event off the coast of New York, where participants braved freezing cold temperatures to jump into the icy Atlantic Ocean. The event has been a huge success, bringing in over $23,000 in January and February. More details about this local fundraiser can be found at The Polar Bear Plunge First Giving site here. Many thanks to everyone that organized and participated in The Polar Bear Plunge! If you would like to organize a local fundraiser in your community, we have resources that will assist you with this endeavor! Please fill out our fundraising form, and once you have submitted the form, you will be able to access a document that provides guidance for leading a local fundraiser.

Our efforts at creating a video highlighting Cholangiocarcinoma are underway, but we still need your help. If you have not already done so, please consider recording a friend or colleague attempting to say “Cholangiocarcinoma” and email the digital video to Rick Pollock at rick@cholangiocarcinoma.org.

While the achievements in February have been well received, we know we can still do more. Please take some time to think of other awareness ideas that we can incorporate for the awareness month in 2012. All ideas can be submitted to info@cholangiocarcinoma.org.

Again, thank you all for your continued support, and for participating in raising money and awareness last month. We ask that you please continue these efforts throughout the year, as we have much more work to do before Cholangiocarcinoma is recognized in the general population. Also, please continue checking our calendar for upcoming events!

The Cholangiocarcinoma Foundation Sponsors Conquer Cancer Foundation of ASCO Young Investigator Award

2011-03-01T00:00:00.000-07:00

FOR IMMEDIATE RELEASE
Contact: Sara Hinkley (801) 999-0455

Salt Lake City, UT - The Cholangiocarcinoma Foundation has announced it is supporting the 2011 Conquer Cancer Foundation of ASCO Young Investigator Award in Cholangiocarcinoma Research. The one-year, $50,000 grant will be given to a promising investigator conducting research in cholangiocarcinoma (bile duct cancer). Awarded by the Conquer Cancer Foundation of the American Society of Clinical Oncology (formerly known as The ASCO Cancer Foundation), the grant is intended to raise awareness and trigger progress against this rare disease, while providing critical funding for physician-scientists at the beginning of their careers.

“The Cholangiocarcinoma Foundation analyzed the successes of other organizations in funding research, and found that many successful programs funded researchers early in their investigative careers,” says President Sara Hinkley. She added, “Providing early-career grants helps encourage investigators to focus their careers on cholangiocarcinoma. While the Foundation has strong relationships with leading hepatobiliary cancer researchers, building a quality grant-review program is challenging and requires dedicated resources currently not available within our organization.”

The Conquer Cancer Foundation Grants Selection Committee will determine the recipient by evaluating the scientific merit and potential career-development impact of the Young Investigator Award applications using a two-part peer-review process. Grant recipients will be announced in April 2011.

For more information or to donate in support of the Young Investigator Award in Cholangiocarcinoma Research, please contact the Cholangiocarcinoma Foundation at (801) 999-0455 or visit us on the web at www.cholangiocarcinoma.org. To learn more about the Conquer Cancer Foundation, visit www.ConquerCancerFoundation.org.

The Cholangiocarcinoma Foundation is a 501(c) (3) non-profit organization. Its vision
is to bring about a CURE for cholangiocarcinoma through increasing the Collaboration, Understanding, Research and Education of the disease.

Spotlight Webinar: Dealing with the Emotions of Diagnosis

2011-02-21T00:01:00.006-07:00

" . . . the test results are back and there are tumors on your liver . . ."

With those chilling words, the emotional and physical battle begins for those diagnosed with cholangiocarcinoma. Immediate questions may arise as to how to cope, emotionally, with this shocking news. Psychologist Geret Giles discusses the initial impact of diagnosis in an exclusive webinar from cholangiocarcinoma.org.

Dr. Giles will present concepts and ideas to help deal with the early emotional stages of fighting this disease.

The following topics, among others, will be discussed:

Initial Disclosure: Who, What, How, and When to Tell
Balancing Realism and Hope
Making Room for the Disease Without Giving In to It
A Word for Loved Ones

Join us, Saturday, February 26, 2011 at 3pm Eastern Time.

Please click here to register.

Branching Out: How To Establish a Local Cholangiocarcinoma Support Group

2011-02-13T22:51:00.006-07:00

The Cholangiocarcinoma Foundation is pleased to introduce an informational series focused on helping you get involved in with developing local resources for the cholangiocarcinoma community. Our first webinar is being led by our own Mark Stephens, who successfully built a support program at Winship Cancer Institute of Emory University. This webinar will address how to establish a local cholangiocarcinoma support group in your community, with detailed emphasis on the following issues:

Definition of a local support group
Why establish a local support group?
Who should you enlist to help you establish this group?
How to recruit attendees for the support group?
Logistics and communication of establishing a support group

Following the presentation will be a question and answer session.

Please join us on Saturday, February 19, 2011, at 2:00 p.m. Eastern Standard Time.

Click here to register.

We welcome the community to forward your local efforts so that it can be featured in future webinars. Please forward details to Sara Hinkley at sara.hinkley@cholangiocarcinoma.org.

Spotlight on Young Investigator Award and 2010 Review

2011-02-11T10:04:00.005-07:00

Back in September 2010, The Cholangiocarcinoma Foundation announced that it was partnering with the American Society of Clinical Oncology (ASCO) in supporting a 2011 Young Investigator Award in cholangiocarcinoma research. The Young Investigator Award is a one-year grant designed to encourage and promote high-quality research in clinical oncology, and it supports early career researchers in transitioning from a fellowship program to faculty appointment.

We are excited to have Jennifer King from Conquer Cancer Foundation (formerly The ASCO Cancer Foundation) join us on Wednesday, February 16 at 11:00 a.m. EST to discuss the Young Investigator Award with our community. Additionally, Jennifer will present details regarding an international award that The Cholangiocarcinoma Foundation is considering supporting.

In addition to Jennifer's presentations on these awards, Sara Hinkley will present a review of The Foundation's efforts in 2010, and discuss our upcoming initiatives for The Cholangiocarcinoma Foundation in 2011. We hope you are able to join us for this important review, and offer any comments on where you would like us to focus our future efforts.

Please join us: February 16, 2011 - 11:00 a.m. Eastern Standard Time

Click here to register.

Please keep an eye on our calendar. Future webinars will spotlight support groups, additional bile duct cancer treatments, and highlight active clinical trials tot he 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.

Day Two of Awareness Month

2011-02-02T08:52:00.006-07:00

For day two of awareness month, we are working on getting the word out through Facebook. If you're on Facebook, come check us out and like us. We have a great community.

Already like us? (Thanks for that. We like you too.) Then recruit three, five or ten friends to like us.

Visit us on Facebook at: facebook.com/cholangiocaricnoma

Not sure about joining Facebook? Here’s what you’ll get out of it: A great community of people who are eager to help and support each other, the latest articles on bile duct cancer and up-to-date research news.

February is Cholangiocarcinoma Awareness Month

2011-02-01T13:13:00.003-07:00

The Cholangiocarcinoma Foundation has designated February as cholangiocarcinoma awareness month. Several events will be taking place this month in order to raise awareness of bile duct cancer. Events include fundraising for 2011's Young Investigator Award, awareness drives on Facebook and Twitter and a call on Congress.

Plus, 100% of donations recieved this month will go directly to research.

Come back every day this month and see how you can help. Visit our activities calendar at: http://www.cholangiocarcinoma.org/events.htm

Let's get out there and spread the word!

The Cholangiocarcinoma Foundation Commits to Funding 2011 ASCO Young Investigator Award

2010-09-06T19:28:00.009-06:00

The Cholangiocarcinoma Foundation is excited to announce that it is partnering with the American Society of Clinical Oncology (ASCO) in supporting a 2011 Young Investigator Award in Cholangiocarcinoma Research. The Young Investigator Award is a one-year grant designed to encourage and promote high-quality research in clinical oncology, and supports early career researchers in transitioning from a fellowship program to faculty appointment.

The Cholangiocarcinoma Foundation is committing $50,000 for funding a promising investigator in his/her early career cholangiocarcinoma research. This commitment enabled The Cholangiocarcinoma Foundation to designate selection criteria that assures the money is directed to an early career investigator focused on research in cholangiocarcinoma. The ASCO Cancer Foundation Grants Selection Committee determines the recipient of the 2011 Young Investigator Award in Cholangiocarcinoma Research, evaluating the scientific merit of the Young Investigator Award applications using a two-part peer-review process. Recipients of the Young Investigator Award will be announced in April 2011.

Interested applicants can find additional information regarding the Young Investigator Award from the ASCO Cancer Foundation at http://www.ascocancerfoundation.org/TACF/Grants/Grant+Opportunities/Young+Investigator+Award. The submission deadline for applications is 11:59 p.m. EDT on September 21, 2010.

Spotlight Series: 2010 Review of Controversies in Surgical Treatment

2010-07-24T15:20:00.005-06:00

As part of our ongoing educational series, The Cholangiocarcinoma Foundation invites you to join us for the upcoming web-based seminar featuring a review of surgical treatment for bile duct cancer. Dr. Michael Choti from Johns Hopkins Medicine will lead this webinar entitled, "Controversies in the Surgical Management of Bile Duct and Gallbladder Cancers." A question and answer session will follow Dr. Choti's remarks. Dr. Choti will focus this webinar on available surgical treatments for bile duct and gallbladder cancers, and address associated controversies with each treatment. We encourage participants to submit questions in advance of the webinar to Sara Hinkley at sara.hinkley@cholangiocarcinoma.org.

Please join us: August 18th, 2010 - 8:00 p.m. Eastern Daylight Time

Click here to register.

Future webinars will spotlight additional bile duct cancer treatments, as well as highlight 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.

Bumper Stickers Are Here

2010-07-20T18:56:00.005-06:00

Hi everyone,

Check our our new bumper stickers. More are in the works and coming soon. Let us know what you think.

Plus when you shop our store today, you can save $5 off any order of $40 or more. Offer is good through 7/24/10.

Visit our store.

We thank you for your support.

Whitten Family

2010-06-25T09:45:00.006-06:00

I love my work for the Cholangiocarcinoma Foundation. I love receiving cards and letters filled with hopes and dreams for the future. Several weeks ago I opened a letter that filled me with such emotion it brought tears to my eyes, and I immediately shared it with the team here. I would like to share a portion of the letter (with the approval of the family) with you too. I hope that it will inspire you as it inspired me. Together we can make a difference in the fight against bile duct cancer.

In March of 2008, Thomas E. Whitten Jr. passed away from cholangiocarcinoma. His family has been a great support to the foundation, it always stirs a lot of emotion in me when families are able to find a way to turn their personal grief into hope for others; this is what the Whitten family has done and continues to do.

Often times we think of our families as those with whom we live. However, most of us actually spend the largest part of our day with another family, those with whom we work. It’s Thomas Whitten’s work family who sent the letter that I want to share with you today. The letter was from John P. Pearl – the President of Pearl Automotive, Peoria, IL. It states, “Tom [Whitten] was the President and General Manager of Pearl Automotive, and since his passing we have allocated a portion of the profit from every vehicle sold at our dealerships to helping fight this terrible disease. The enclosed funds represent the total proceeds through our efforts.”

The foundation received proceeds in excess of $15,000.

We can never give enough thanks to the families, both at home and in the workplace, who continue to assist us in our efforts to improve & increase collaboration, understanding (advocacy), research and education for bile duct cancer.

Once again I would like to thank Mr. Pearl and the Pearl Automotive family for their generosity of spirit.

Stacie Lindsey
Executive Director

CanLiv and The Cholangiocarcinoma Foundation Partner for Inaugural Bile Duct and Gallbladder Cancers Symposium

2010-06-04T09:14:00.002-06:00

Last month, The Cholangiocarcinoma Foundation partnered with CanLiv: The Hepatobiliary Cancers Foundation in the inaugural Biliary Tract and Gallbladder Cancers Symposium in Alexandria, Virginia. This event brought together pre-clinical researchers, clinical researchers, and advocates to spend the day discussing the current state of bile duct and gallbladder cancers research, and developing a strategy for moving forward. Researchers attending came from institutions around the world, including Alpert Medical School Brown University, Cancer Institute of New Jersey, Clinica Alemana Santiago Universidad de Chile, Columbia University Medical Center, Emory University, Fox Chase Cancer Center, Hollings Cancer Center, Indur Endoscopy and Gastro Hospital, Johns Hopkins University, Massachusettes General Hospital Cancer Center, Mayo Clinic, MD Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, the National Cancer Center Japan, the National Cancer Institute, the National Institutes of Health, Princess Margaret Hospital, Thomas Jefferson University, Tokyo Women’s Medical University, Universidad de la Frontera, University of Kansas Cancer Center, USC Norris Comprehensive Cancer Center and Hospital, Vanderbilt-Ingram Cancer Center, and the Virginia Commonwealth University School of Medicine. Private industry attendees includes representatives from Abbott Laboratories and Onyx Pharmaceuticals. Advocates attending the event included representatives from The Cholangiocarcinoma Foundation, CanLiv, the Cancer Information and Support Network, Target Cancer, as well as numerous survivors and caregivers. (pictured)

Participation at the meeting underscored the importance of collaboration amongst the interested stakeholders in bile duct and gallbladder cancers. On average, new treatments spend roughly 15-17 years navigating the complex development process from conception to FDA approval. When applying this standard development process to underserved cancers, such as bile duct cancer, the development timeframe can become even further exasperated. Challenges impeding progress in bile duct cancer include limited resources, poor clinical trial accrual, and fragmented impassioned stakeholders.

Participants at the conference focused on efforts for addressing the challenges and decreasing the timeframe for developing new treatments. Potential initiatives emerged from the event, including creation of a research consortium; advocating for the National Cancer Institute for increased funding for biliary tract and gallbladder cancers research; creation of a shared clinical trials database; creation of a patient treatment database; creation of a shared biospecimen bank; and investing in high through-put drug screening through the National Human Genome Research Institute, to name a few. The Cholangiocarcinoma Foundation and CanLiv are currently evaluating the various initiatives, and mapping a strategy for moving these initiatives forward.

Special thanks are extended to Dr. Melanie Thomas and CanLiv for inviting The Cholangiocarcinoma Foundation to collaborate in this groundbreaking event. We look forward to continuing our partnership in accelerating research for bile duct and gall bladder cancers in the coming years.

2010 PSC Partners Seeking a Cure Annual Conference

2010-05-21T13:36:00.005-06:00

The Cholangiocarcinoma Foundation would like to thank PSC Partners Seeking a Cure for inviting us to attend their 2010 annual conference last weekend (May 14th-16th) in Hartford, CT. It was a great three-day event which included top physicians lecturing on everything from “making the diagnosis” to “how to communicate with your physician”. The Cholangiocarcinoma Foundation was happy to participate by lending support and distributing information to attendees about bile duct cancer, which can result from complications of PSC. Many of the attendees already knew about the possibility of developing bile duct cancer and even remembered the Cholangiocarcinoma Foundation from the Chicago conference –those bracelets are working! Together with PSC Partners Seeking a Cure, we hope to continue to create awareness for all diseases affecting the bile ducts.

Special thanks to Ricky Safer, we look forward to working together and to 2011’s conference.

Primary sclerosing cholangitis (PSC) is a rare autoimmune bile duct disease that causes the bile ducts inside and outside the liver to become scarred, narrowed and eventually blocked. As more and more ducts are blocked, bile becomes trapped and damages the liver. Complications from PSC can cause cholangiocarcinoma (bile duct cancer).

A Research Grant for Bile Duct Cancer

2010-05-20T14:23:00.002-06:00

The American Cancer Society has awarded 152 new research and training grants to investigate the causes, prevention, and early detection of cancer. These new grants include testing the idea that serotonin and dopamine help bile duct cancer cells migrate and invade other tissues, in hopes of identifying targets for the development of new treatment options. Learn more about this and other grants at: http://www.webnewswire.com/node/535620

$5,000 GoodSearch Giveaway - Three Days Only!

2010-04-05T16:05:00.003-06:00

GoodSearch will donate a $1 for every toolbar that is downloaded between April 6th at 9am Eastern and April 9th at 9am Eastern up to $5,000!! Please download the toolbar right now by following this link -
http://www.goodsearch.com/toolbar/cholangiocarcinoma-foundation

Our new Cholangiocarcinoma Foundation toolbar is free to download and allows you to raise money for our cause every time you search or shop online! Once added to IE or Firefox, each time you shop at more than 1,300 stores (from Amazon to Zazzle!) a percentage of your purchase will automatically be donated to the Cholangiocarcinoma Foundation- at no cost to you (and you may even save money as the toolbar provides coupons and deals as well!). The toolbar also has a search box and each time you search the Internet, about a penny is donated to the Cholangiocarcinoma Foundation.

Please hurry and do this now so that we can earn the $1 bonus per toolbar!

And, please pass this along to all of your friends. The two minutes it takes to add this toolbar to your browser can make a lifetime of difference for our cause!

Get the toolbar NOW!

Spring is here!

2010-04-01T18:54:00.005-06:00

We've just launched a spring fundraising campaign for all the gardeners out there. To help fund research grants this May, we are partnering with Flower Power to sell top-quality, best-selling flower bulbs and plants. For every purchase you, your friends or family make, the Cholangiocarcinoma Foundation will receive 50% of the total sale.

Just go to our special web page, flower fundraiser and choose your favorite spring flowers or plants. We’ll receive 50% of the sale, and you’ll receive a beautiful garden with a 100% satisfaction guarantee.

Thank you for your support and enjoy the season.

Visit our flower fundraiser page.

Board Member Changes

2010-03-26T19:49:00.002-06:00

We are very pleased to announce the addition of a new board member, Dawn Lyon. Dawn has over 10 years experience in marketing with top agencies. As Senior Account Director for Crossbow Group, she directs marketing strategy, tactics and execution to build customer relationships and deliver measurable results. She holds a B.S. in Advertising from the SI Newhouse School of Communications at Syracuse University and an M.B.A. from The University of Connecticut. Her mother was diagnosed with cholangiocarcinoma in June 2008. Dawn is amazing and we feel blessed to have her join us.

Sara Hinkley is now serving as the President of the foundation. Sara, has been with the foundation from the beginning. Her direction, insight and expertise will continue to move us toward our goals.

Ray Clements, former President will continue serving as a board member, we want to thank him for his time at the helm of the foundation.

I want to thank all of the board members, past and present. They have given of their time and talents to make a difference and move our efforts forward. Thank you so much!

Spotlight on Clinical Trials: Capecitabine, Gemcitabine, and Radiation Therapy in Treating Patients With Cancer of the Gallbladder or Bile Ducts

2010-03-10T21:29:00.010-07:00

As part of our ongoing Spotlight on Clinical Trials series, The Cholangiocarcinoma Foundation invites you to join us for the upcoming web-based seminar featuring the active cholangiocarcinoma clinical trial entitled, "Capecitabine, Gemcitabine, and Radiation Therapy in Treating Patients With Cholangiocarcinoma of the Gallbladder or Bile Duct." Principal Investigator Dr. Edgar Ben-Josef of the University of Michigan will lead the discussion of this clinical trial. A question and answer session will follow Dr. Ben-Josef's remarks.

Please join us: March 23rd, 2010 - 11:30 a.m. Eastern Daylight Time

This clinical trial was developed by the Southwest Oncology Group, and is a multi-center phase II clinical trial studying how well giving capecitabine together with gemcitabine followed by capecitabine and radiation therapy works in treating patients with cancer of the gallbladder or bile duct. In this trial, participants receive oral capecitabine every 12 hours on days 1-14, and gemcitabine hydrochloride IV over 30 minutes on days 1 and 8. Treatment repeats every 21 days for 4 courses in the absence of disease progression or unacceptable toxicity. After the 12 week cycle concludes, participants begin receiving oral capecitabine every 12 hours on days 1-7, and undergo concurrent three-dimensional or intensity-modulated radiotherapy on days 1-5. Treatment repeats weekly for 5-6 weeks in the absence of disease progression or unacceptable toxicity.

Creative Confections for Cholangiocarcinoma Awareness!

2010-03-09T21:57:00.005-07:00

Direct from Sweden, our very own Kris and Hans Jurgens helped raise awareness of bile duct cancer through discussion and creative confections! Kris and Hans made dozens of cookies, decorating them with the trademark Cholangiocarcinoma Foundation colors of green and white. Hans then took them to work, where he shared them with coworkers during a coffee break. Hans took time to explain Cholangiocarcinoma Awareness Month, and handed out bile duct cancer awareness bracelets to all his coworkers. While the incidence of bile duct cancer is low, bile duct cancer is of particular impact to Hans' colleagues because in addition to Kris having bile duct cancer, one of Hans' coworkers lost her mother to bile duct cancer last year.

Extremely discerning palates revealed that Kris and Hans are quite the chefs. Not only do these cookies look delicious, but they taste delicious as well! As Kris reported, one of the coworkers brought extra cookies home to his daughter. His 3-year-old daughter loved the cookies so much that she began crying when they were gone. She then phoned Kris and Hans to proclaim, "I like cookies. Can I have some more?" Yes, please! More cookies, and more awareness. Thank you Kris and Hans for finding such positive and creative ways of increasing awareness of bile duct cancer in your local community!

Become a Fan of the Cholangiocarcinoma Foundation

2010-03-09T21:31:00.009-07:00

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" for some pics and I'd subject myself to all of the trappings that would come with that. (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

2010-02-12T12:49:00.007-07:00

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

2010-02-10T10:47:00.011-07:00

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

2010-01-29T14:43:00.003-07:00

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

2010-01-25T14:38:00.006-07:00

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

2010-01-24T21:33:00.005-07:00

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

2009-12-29T17:22:00.018-07:00

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

2009-12-28T16:50:00.006-07:00

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.