Fantastic news Marion!

Hi all!

I am overwhelmed with emotion, but I echo everyone's sentiments thus far on this post..   What an incredible conference once again... It just keeps getting better and better each year.  Melinda's story is truly inspiring and it was such an honor to be sharing the registration table with such a "superstar" (as I lovingly called her during our time together).  It was so wonderful to reconnect with my fellow volunteers,  share our individual stories and talk about our loved ones with new members of the foundation family as well.  The conference itself was a huge success once again, with incredible physicians, specialists, nurses, researchers and the like, attending from all corners of the globe; all dedicated to helping find a cure for this monster.  The research and discoveries being made continue to astound us and provide immeasurable hope to all of us.  As the attendees exited on the final day of the conference, tired but determined, we received nothing but praise to pass on to Stacie, Donna, Marion and the entire team.

WE WILL BEAT THIS MONSTER.. I have no doubt.

Love to all,


(13 replies, posted in General Discussion)

Fantastic news!! Love and prayers for everyone involved!

Hi folks,

I just wanted to take a moment to introduce myself to all of you wonderful people on the message boards! I've been a longtime "lurker" so I've finally decided to step out of the shadows.

My name is Rob, I lost my mother to this terrible cancer on January 17th, 2013. From diagnosis to death, she barely made it past two months.  When she was diagnosed, I struggled to find answers as to what this cancer exactly was, whether there was a "cure", how long my beloved mother would live and how her quality of life would be affected.  Sadly, I only had a brief moment to browse these forums before the next two months of my family's life would become a living hell. But in that short amount of time I was truly blown away by the sense of pure love and unending support that each of you were providing to each other in your respective "times of need".. whether that was losing your loved one and asking for a prayer or going through another round of exhausting chemotherapy and asking for an ear to vent to. I truly felt comforted during my own personal times of emotional struggle even though I had never posted a single word on the forum.  For that, I would like to thank each and every one of you.

Last year I was fortunate enough (and honored) to be connected with the foundation to offer my time and energy as a way to give back just a fraction of the love and support I've "taken". Since then, I have been traveling to conferences with other wonderful volunteers and members who have all been affected in various ways by cholangiocarcinoma.  I hope to bring a more personal face and social media connection to the foundation in the coming months!  I'll be posting some of the photos from our travels on the boards from time to time as we take the foundation "on the road" to widen our already massive, worldwide reach. Everywhere we go, we are often greeted by some of the most respected members of the medical community from the best facilities around the globe. They come up to US to thank us for being there for their patients and families, when in reality we are thankful beyond words for THEIR experience, knowledge and assistance with our efforts to find a cure for this disease!  It is a truly humbling thing to see. That being said, we are also forming new relationships every day with physicians, experts, researchers, etc... all who will be pivotal in helping us build a better foundation for YOU.

With this illness, we are all a member of a family we never wanted to be a part of, but rest assured, I can tell you firsthand that this foundation is made up of the most wonderful, selfless people whose every waking minute is spent trying to heal the afflicted, comfort the mourners and honor the departed... and we will not stop.

Thank you for taking a moment to let me ramble and I'm excited to chat with you all in the future and give you a glimpse into the foundation's team efforts.

Love to each and every one of you,