The Cholangiocarcinoma Foundation (CCF) has made progress on several projects throughout the spring and summer. The following three projects are nearing completion, and we anticipate they will be of great benefit to our worldwide community of patients, caregivers, medical professionals, and collaborative partners.

The book, 100 Questions and Answers about Biliary Cancer by Dr. Ghassan Abou-Alfa and Dr. Eileen OReilly, and supported by CCF is now in print. In 2014, hard copies of this resource will be found in doctors offices and cancer patient resource libraries throughout the country. It will also be available free for download on our website.

The CCF Patient Registry is an online database which will allow patients to enter their demographic information and health history into one central database. This will be the first patient registry of its kind specifically for patients with cholangiocarcinoma. The registry will screen patients for clinical trials as well as accelerate research.

A Cholangiocarcinoma Stakeholders Meeting for physicians that treat and study cholangiocarcinoma will take place on February 27-28, 2014 in Salt Lake City, Utah. It will be held in cooperation with The Hepatobiliary Cancer Research Program at Huntsman Cancer Institute, and in collaboration with Target Cancer and The BiliProject Foundation.

I invite you to visit our website at www.cholangiocarcinoma.org where you can find additional information and be regularly updated on our progress. Your continued support is vital to our mission. I extend our heartfelt gratitude for your generosity.

With sincere appreciation,

Stacie Clements Lindsey

Presidents Message

STACIE CLEMENTS LINDSEY BOARD PRESIDENT

The Cholangiocarcinoma Foundation FALL 2013 NEWSLETTER

Stacie Clements Lindsey

Jo Bryant was a healthy, working teacher and a very involved mother and grandmother when she was unexpectedly diagnosed with intrahepatic cholangiocarcinoma. By the time Jo was diagnosed, the cancer was already Stage IV and surgery was not an option.

On May 29, 2012, on her way to the KU Cancer Center, Jo passed away. Jo touched the lives of thousands of students throughout her career and life. Jo also had a close group of friends with whom she associated for more than 40 years.

In her honor, the Jo Bryant Memorial Foundation was started with the

goalofhelpinginthefightagainstcholangiocarcinoma. The signature event of the Foundation is the Journey for Jo 5K Run/Walk & Kids Dash. The 1st annual Journey for Jo was held on June 1, 2013 at Washburn University in Topeka, Kansas. Proceeds of $10,000 were donated to The Cholangiocarcinoma Foundation. 300 registered participants, plus other family members and volunteers came out on a beautiful day and made the event a great success. Many people participated or volunteered in honor of a loved one. We were pleased to have a cholangiocarcinoma survivor participate as well as a patient who despite currently battling

cholangiocarcinoma was able to complete the 5K with her team of 18 friends and family members.

Plans are underway for the 2nd annual event. We miss Jo every day, but are happy to be able to keep her memory alive for so many people and help raise awareness and money for cholangiocarcinoma. Although considered a rare disease, it is amazing how many people just in the surrounding area have been touched by it. Details about the 2014 event will be available at journeyforjo.com and on Facebook at facebook.com/journeyforjo.

FUNdraising Spotlight

In 2007, I lost the love of my life, my incredible husband of 36 years, Jacques, to Cholangiocarcinoma. Jacques was so young and full of life. He was never sick a day in his life. He worked hard running his own construction business for 34 years, until he was diagnosed in 2006. There were 18 months of ups and downs,butlookingbackwefilledthattime making memories and recalling ones we had already made. The last 7 weeks of Jacques life my two adult children, Shawn and Rachelle, helped me take care of him around the clock at home where hewantedtospendthefinalweeksofhis

life. We all took time off of work and spent those precious 7 weeks with the man we loved,rightuptohisfinalbreath.Ourhouse was full of energy and love the door was always open for visitors except for a few times we put a sign on the door asking for privacy. Our family, friends, and community were wonderful during this time; which showed how much Jacques was loved and admired.

WhenJacqueswasfirstdiagnosedI had never heard the word cholangiocarcinoma before. Little did I know, how much I was about to

learn. In late 2006, I came upon The Cholangiocracinoma Foundation website and that is where I felt a connection to others who truly understood what I was going through and offered support and some answers. I corresponded with Marion, who I now consider a dear friend and also Peter from Vermont (both who

Volunteer Highlight: Barbara Dupont

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We would like to highlight how youth have supported The Cholangiocarcinoma Foundation over this last summer by fundraising, raising awareness and sending out a message of hope:

Students from Staten Island Technical High School held a fundraiser for their classmate Amy, who passed away last year as a senior just before her 17th birthday of cholangiocarcinoma. They raised $2500 for The Cholangiocarcinoma Foundation in honor of Amy.

13-year-old Julia lost her father, Steven Hum earlier this year to Cholangiocarcinoma. In memory of her father, Julia wanted to contribute money for a cure and to raise awareness about Cholangiocarcinoma. To accomplish her goal, Julia designed a Find-a-Cure themed t-shirt and sold them online. She raised over 700 dollars during the summer. Her t-shirt campaign ended on August 23, her fathers birthday. Julia said, I strongly believe that even though it is too late for my dad, there are still lots of people who have this cancer and it will one day be cured.

Mira founded a support organization in honor of her father Alok. Read her remarkable message of strength and hope, in her own words, below:

My Story -My name is Mira and I am a sixth grader. I have created a non-profit organization, engineers4cancer,to provide support to the caregivers of

the patients of this terrible disease. I was eight years old when my dad was diagnosed with cancer. At the time, I wasnt sure what cancer exactly was, but I knew enough to tell that this disease is not one that can be cured with a few injections. I didnt know what to think, I wasterrified!Wehopedforthebest,butmy dad became weaker by the day, and he didnt even have the energy to talk to me. I would give anything to turn back the clock and see his smiling face again. He passed away on January 30th 2013.

We were fortunate to have a dedicated team of caregivers in the form of our family and friends looking after my dad 24/7. We got a lot of support from my mom and dads workplace and my friends and teachers at school. We can never thank them enough. Then I realized that not all cancer patients and their caregivers are so lucky that they have lots of extended family with them during their tough time. I wonder who would look after the kids. Who would drop off food so they can focus on caregiving? Who would give them flowersorcardstocheerthemup?

These questions made me want to take action and cheer up the struggling families. With treatments and constant care giving, a smile seems no less than a miracle. But through my experience, I learned that there is one word that can make someone smile even if they feel like the only thing left is accepting defeat Hope.

Sharing a Message of Hope Kids can make a Difference

Julia and her father, Steven Hum

Mira and her father, Alok

were being treated by the same surgeon as Jacques Dr. Roger Jenkins at Lahey Clinic. I have had the pleasure of meeting so many from the foundation: Stacie, Kim, Sara, Dawn, Rick, Percy, Karen, Stella and many more.

After Jacques passed, on November 10, 2007, at the young age of 56 I knew that I could wallow in my sorrow or get involved in something to make a difference I made the decision that I hadtodosomethingtofightthecancerthat took my husband so I focused my attention on becoming a crusader against cancer. I became involved with The Cholangiocarcinoma Foundation in 2008.

I have attended conferences, conventions, and symposiums talking with attendees to raise awareness and get them involved in the research for a cure.

Lastyear,tohonorJacquesonthefive-year anniversary of his death and to raise awareness for Cholangiocarcinoma, I organizedabenefitinNovemberof2012.Over $5,000 was raised and donated to The Cholangiocarcinoma Foundation. I amplanningthe2ndAnnualBenefitonOctober 26, 2013 and it will be bigger and better. As long as I am able, I will never stop using my voice and energy to raise awareness for Cholangiocarcinoma. Everyones life has been effected by cancer

one way or another and people who know me know my wish as I have said this many, many times; I hope one day to look up the word cancer in the dictionary and forthedefinitiontosay,Cancer-ONCEadeadly disease.

Not a day goes by when I am not thinking about my Jacques I miss him more and more each day. I love being involved with The Cholangiocarcinoma Foundation and I will continue to do whatever I can to help the foundation. If anyone is thinking of getting involved, or perhaps you are nervousaboutgettinginvolved,jumpin!It is very rewarding. I know for me it adds more meaning to my life.

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www.cholangiocarcinoma.org | 3

Congratulations to the Young Investigator Award Recipient Dr. Supriya Saha

The Cholangiocarcinoma Foundation is pleased to introduce our Young Investigator Award Recipient Dr. Supriya Saha. You can view a webinar entitled Modeling Cholangiocarcinoma which describes his current research at http://www.cholangiocarcinoma.org/media.htm

About the Webinar: Like all cancers, cholangiocarcinoma is a genetic disease. I will present our effort to comprehensively charac-terize the genetic landscape of cholangiocarcinoma and to use this information to develop genetically representative models of this disease that will serve as instrumental tools in our search for novel therapies.

About Dr. Saha: Dr. Saha attended Harvard University where he received his bachelors degree in biochemical sciences and gradu-ated with honors. He then returned to Southern California to attend the Medical Scientist Training Program at the David Geffen School of Medicine at UCLA, where he obtained his MD and PhD. At UCLA, Dr.Sahaexploredresearchinthefieldofimmunologyandhelpedcharacterize how our bodies rapidly detect and respond to viral and bacterial infections.

Following his graduate education, Dr. Saha joined the Brigham and Womens Hospital to complete his residency training in internal medicine and subsequently entered medical oncology fellowship at the Dana-Farber/Harvard Cancer Center. Currently, Dr. Saha is working as a senior fellow in the laboratory of Dr. Nabeel Bardeesy. In his current project, Dr. Saha is attempting to characterize the

RResearch: Webinars from Summer 2013

If you are new to caregiving, we understand that you may have questions, fears, and anxieties about handling this role. One of the most valuable tools on our website is our discussion board. This moderated on-line community allows patients and caregivers to connect with others who are battling cholangiocarcinoma.

Additionally, Heidi Lowitzer, RN shared the following article which contains advice and encouragement to assist you in feeling secure and capable, while avoiding caregiver burnout or distress.

http://www.helpguide.org/elder/caring_for_caregivers.htm

UUnderstanding: Caregiving Support & Help Article

Ghassan K. Abou-Alfa, MD- Memorial Sloan Cancer Center

Steven R. Alberts, MD, MPH- Mayo Clinic

Nabell Bardessy, PhD- Harvard Medical School and Massachusetts General Hospital Cancer Center

A. William Blackstock, Jr., MD- Wake Forest Baptist Medical Center

Charles Blanke, MD- Oregons Health and Science University- Knight Cancer Institute

William C. Chapman, MD, FACS- Washington University School of Medicine in St. Louis

Michael Choti, MD, MBA.- John Hopkins Cancer Center

Laura Dawson, MD- The Princess Margaret Cancer Center

Laura Williams Goff, MD- Vanderbilt University Medical Center

Gregory Gores, MD- Mayo Clinic

Daniel G. Haller, MD, FACP, FRCP- University of Pennsylvania

Renuka Iyer, MD- Roswell Park Cancer Institute

Milind Javle, MD- MD Anderson Cancer Center

Tomoaki Kato, MD- NewYork-Presbyterian Hospital/Columbia University

R. Kate (Katie) Kelley, MD- UCSF Medical Center

RichardKim,MD-MoffittCancerCenter

Robin D. Kim, MD- Huntsman Cancer Institute and University of Utah

Jennifer Knox, MD, MSc, FRCPC- Princess Margaret Cancer Center

Heinz-Josef Lenz, MD FAC- USC Norris Comprehensive Cancer Center

Robert C. G. Martin II, MD, PhD- University of Louisville

Rebecca A. Miksad, MD, MPH- Dana-Farber, Harward Cancer Center

Bruce D. Minsky, MD- MD Anderson Cancer Center

Tushar Patel, MB, ChB- Mayo Clinic

Lewis Roberts, MB, ChB, PhD- Mayo Clinic

Abby Siegel, MD, MS-New York- Presbyterian Hospital/Columbia University Medical Center

Weijing Sun, MD, FACP- University of Pittsburgh Cancer Institute

Jeffrey C. Weinreb, MD, FACR, FISMRM- Yale School of Medicine

Alan P. Venook, MD- UCSF Medical Center

CCollaboration - Medical Advisory Committee (MAC) UpdateThe Cholangiocarcinoma Foundation is pleased to present our Medical Advisory Committee (MAC). We would like to recognize and thank new and existing MAC members who continue to serve and support our mission.

continued on next pagewww.cholangiocarcinoma.org | 4

I attended the ASCO convention in Chicago as part of the Research Advocacy Networks training program for patient research advocates. Over 25,000 people from all over the world attended theconvention.Astherewerenosessionsspecificallydevotedto cholangiocarcinoma, I attended sessions in related areas such as pancreatic cancer (the source of many potential treatments for cholangiocarcinoma), hepatocellular cancer, tumor biology and immunotherapy. I also attended a very interesting session on the role of palliative care and another on the impact of factors such as age and income level on outcomes of cancer treatment. The topic generating the most excitement at the convention was immunotherapy. Several of the major drug companies are conducting clinical trials of new drugs that trigger the immune system to destroy malignant tumors. Although the new drugs have not yet been tested in cholangiocarcinoma, they show promise in a number of solid tumors.

There were a number of researchers presenting poster boards summarizing their research in cholangiocarcinoma. I introduced

myself to several of these doctors, most of whom were happy to discuss their research with me, and shared information with them about the Cholangiocarcinoma Foundation. I had the opportunity to stop by the Cholangiocarcinoma Foundations booth in the ASCO Patient Advocacy section of the exhibit hall and have dinner with fellow conference attendees Marion, Percy, Barbara and Stella. We are fortunate to have a team of such devoted people working so hard on our behalf.

WhileIdidnotlearnaboutapotentialcureorevenaspecificnewtreatment for cholangiocarcinoma, I did come back with more hope for the future. New understanding about tumor biology, targeted therapy and immunotherapy is changing the world of cancer treatment.Cancersthathadfewtreatmentoptionsfiveyearsagoare now being managed and sometimes even cured. We need to do all that we can to increase awareness of cholangiocarcinoma and encourage more research on this rare disease.

Linda McGovern

EEducation - American Society of Oncology Convention Report

genetic mutations found in cholangiocarcinoma and how these mutations cause cancer. He is developing animal models of chol-angiocarcinoma and attempting to generate a large repository of human cholangiocarcinoma cell lines that may be used to rapidly testtheefficacyofnewdrugcombinationswiththegoalofincreas-ing treatment options for patients.

Thank You Dr. Jimmy Lin for presenting out July Webinar

About the Webinar: The Cholangiocarcinoma Foundation would like to thank Dr. Jimmy Lin who presented Understanding Cancer in the Age of Genomics for our July Webinar. We encourage you to view the recording on our webinar achieves at www.cholangiocar-cinoma.org/media.htm

About Dr. Lin: Dr. Lin is a medical school faculty member at Wash-ingtonUniversityandledthecomputationalanalysisofthefirst

ever exome sequencing studies for any human disease at Johns Hopkins. He has numerous publications in Science, Nature, Cell, Nature Genetics, and Nature Biotechnology. Besides his extensive scientificpublications,DrLinandhisgroundbreakingresearchhas been featured in Forbes, Bloomberg, The Wall Street Journal, TheWashingtonPost,andtheHuffingtonPost.

Dr. Lin is a 2012 TED Fellow and Founder & President of The Rare GenomicsInstitute.RareGenomicsistheworldsfirstplatformtoenable and advance the understanding of any rare disease by us-ing, Dr. Lins cutting-edge biotechnology. The Rare Genomics Insti-tute partners with many of the top medical institutions, including Harvard, Yale, Johns Hopkins, and Stanford, to design custom and personalized research projects for very rare diseases.

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From l to r: Barbara, Marion, Stella & PercyFrom l to r: Linda, Marion, Stella & Percy

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In the name of Theresa TJ Schoenbine - Schoenbine, Janet - The Clorox Company Foundation

In the name of Amy Tan - Staten Island Technical High School

Champion Circle (Donations of $1,000 - $4,999)

In the name of Dan Bayles - Bendard, Tracy - Siffrin, Katherine

In the name of Antionette B. Chavez - Hance, Amanda

In the name of Patty Corcoran - Rusk, Amy

In the name of Billy Fowler - Bennett, Darlene - Boley, Stacey - Chapman, Kim - Coffman, Chris and Donna - Crawford, Nan - EDIS Staff - Francies, Regina - Gardner, Bill and Ann - Harp Enterprises, Inc. - Hunter, W and Christine - Jackson, Edith - Oyler, Beth and Ed - Roger Baird C/O Harp Enterprises Inc - Rollins, Lewis and Geana - Rose, Mr. & Mrs Douglas - Thomas, Sherry - Wells, Carolyn

In the name of Joyce Ellis - Armstrong, John and Patricia - Klein, Mark and Lisa - Phillips, Charlie and Barbara - Reynolds, Jade - Skinner, Linda

- Skinner, Molly - Takahashi, Wendy - The Georgia N Staigh Trust Adm - Waack, Doreen and Peter

In the name of Douglas Greaves - ABB Inc. - Alexander, Kim - Brown, Florence - Diamond, Christine - Fingerpaint Marketing - McDowell, Lisa - OHara, Kathleen - Ramaika, John - Wilson, Patricia Borth - Worley, Guy and Sharon

In the name of Jerry Guthridge - Blevens, Evelyn and Jim - Cross, Jeryl and Steve - Goodnight, Eric - Guthridge, Jerry and Elizabeth - Hammock, Jane - Hawkins, Linda and Bill - Hershman, Edwin - John & Rita Crane - Mazurowski, Norm and Ginny - Peterman, Harold and Susan - Peterman, Theresa - Wilson, Janis E

In the name of Kathy Harris - Alejado, Susan - Bills, David

- Dickerson, Therese - Goodwin, Christopher - Gray, Jane - Meguro, Elaine - Mossman, Delphine - Scott, John M - Shimabuku, Mildred and Hozen - Valentine, Alan

In the name of Rosie McCants - Austin, April - Avery, Aldonta - Caldwell, James and Dorris - McCants, Nicole - Rice, Shayla - Santerfeit, Marvin - Simpkins, Danese

In the name of Sharon Middleton - Brittain, Amy - Floyd, Randy and Jane - Ruff, Amy

In the name of Todd Ramberg - Strawn-Smith, Donna

In the name of Paul Rubinstein - Madilian, Hachik C - Maynard, Lawrence and Bernadette - Oen, Dave and Inne - Pollock, Karen - Rubinstein, Sandi - Suryamega, Carla - Suryamegai, Caryn

In the name of James F. Smith - Broderick, Anne - Cowhey, Joe - Cox, Andrew - Coyle, Joan and Broderick, Colleen - Dambrosio, Stephen and Loretta - Deeney, Joseph and Pauline - DiNardo, Marianne Maier - Donohue, Margaret J - Donohue, Michael and Joan - Fry, Louise - Hegarty, Kim - Jann, William and Patricia - Keal, Robert and Eileen - Klinewski, Chester and Anne - Massaro, Rick and Joan - Quinn, Richard & Jeryl - Vogler, John and Paulette - Walter, Linda J - Zurad, Robert and Diane

Thomas Hardin Dillon: 60 Miles for 60 Years - Ashley, Christopher

- Boynton, Bonner - Brady, Carter - Conolly, Elizabeth - Downing, Frances - Dreyfous, Brooke - Elkin, Eric - Hargadon, Stephanie - Hill-Wood, Julian - McIntosh, Charlotte

- Mellow, Erin - Miles, James - Millard, Bridget - Pendergrast, Patricia - Philpot, Margot Paker - Ridder, Peter - Seitz, Eric - Sexton, Laura - Shean, Jessup - Wainwright, Nina - Welsh, Andree

In the name of Cathryn Topits - Julian, Diane - Loy, Reinhard and Christine - Moran, Tom and Monica - Mueller, Kim - PakLab - Purdy, Ken and Susan - Smith, Richard and Stephanie

In the name of Sarah Updike Sutton, MD - Ash, Stephen and Marianne - Blumling, James and Janet - Criswell, Michael and Emma - DSI Renal - Kuipers, Lee and Sandra - Loew, Robert and Tamara - Shank, John - Velasquez, Katherine - Zoss, John and Donna

Verizon

Wiebe, Steve

Patrons Circle (Donations of $500 - $999)

Journey for Jo 5K - McNeil, Kate - Perbeck, Deborah - Willson, April

In the name of Bruce W. Schwartz - Turbeville, Sean & Dana

In the name of Judith Katherine Sandler - Barteau, Mark - Brynteson, Susan - Chou, Tsu and Lo Chou, Vivian - Danneman, Gene - DelFattore, Joan - Gritz, Michael and Tovo, Janet - Hall, Patti - Izen, Sara and Allan - Joseph, Arleen - Lee, Kelvin - Lenhoff, Abraham and Roleen - Markell, Leni - Mason, Julia

- Mell, Don and Katherine - Mitchem, Nadia - Mosberg, Ludwig - Murray, Richard and Clella - Papoutsakis, Terry and Maria - Quintus, John - Ruckenstein, Eli and Velina - Sandler, Stanley - Scarpitti, Frank and Ellen - Schell, Dianne - Schwartz, Norman and Delia - Scotton, Carol - Weintraub, Stanley and Rodelle - Zlock, Virginia

In the name of Patrick Alexander - Alexander, Bob and Donna - Allen, Bruce and Patricia - Allen, Scott - Anast, James and Caity - Anderson, Marshall and Sue

- Arrons, Mike and Sally - Asbury, Terry - Ball, Luana - Barczak, Ron and Bonnie - Baverman, Randy and Jill - Benson, Bradley - Boettcher, Mr. & Mrs. Brian - Boling, Forest and Glenda - Cleary, Mr. & Mrs. Robert - Czys, Mr. & Mrs. Brandon - Dahlberg, Betty - Dahlberg, Elizabeth - Ellis, Bob and Ann - Erickson, Susanne - Fiske, Charles and Nancy - Fleaka, Mr. & Mrs. John - Greggo, Annette - Heimer, Mr. & Mrs. Chris - Heinz, John and Patty - Hess, Geri - Hopf, Sandy

- Jay, Jack - Jorde, Heather - Maki, Gene and Dona - Markovits, Alans and Gilda - Marubio, Joan - Milleman, Thomas - Miller, David - Miller, Jonathan and Angela - Morrison, Yvonne - Muschitz, Thomas and Sandra - Nelson, Mr. & Mrs. John - Penick, Mr. & Mrs. James - Placzek, Kevin and Carol - Plock, Charles - Pollock, H and D - Quarto, Debra Ann - Rahman, Mr. & Mrs. Jason - Rahman, Mr. & Mrs. Peter - Riche, Louis and Patricia - Riche, Mr. & Mrs. Louis - Sagliano, Joe and Karen

- Searcy, Mr. & Mrs. Darrin - Seehausen, Dan - Skilbred, Mr. & Mrs. David - Snow, Barbara - Springer, Mr. & Mrs. Kip - Stentz, Steve and Bonnie - Sticken, Mr. & Mrs. Jason - Stollfuss, Andrew - Sullivanm Mr. & Mrs. David - Thompson, Mr. & Mrs. Michael - Toomey, Diane and Dave - Ulmer, Antoinette - Ulmer, Carlene - Ulmer, Mr. & Mrs. David - Ulmer, Mr. & Mrs. Michael - Vanderkoon, James and Lawren - Vodak, Veronica - Woodrow, Duane and Phyllis - Workabilities, Inc. - Young, John and Patricia

Legacy Circle (Donations of $10,000+)

www.cholangiocarcinoma.org | 7

The Cholangiocarcinoma Foundation5526 West 13400 South, #510Salt Lake City, Utah 84096U.S.A.

Founded in 2006, The Cholangiocarcinoma Foundation is a non-profit 501(c)(3). Our focus is assisting patients and caregivers, supporting research to improve diagnosis and early detection, and advancing therapies for prolonging and improving quality of life for those affected by cholangiocarcinoma (bile duct cancer).

www.cholangiocarcinoma.org | 8