August 7, 2018 at 10:19 am #97340gavinModerator
Thanks loads for posting that Mary. Marion will sure be missed by all of us.
GavinAugust 5, 2018 at 2:30 pm #97335bglassModerator
Here is a piece on Marion and her amazing work as an advocate for all of us, from the New York Times.
Reminder – if you would like to contribute a testimonial for the tribute the Cholangiocarcinoma Foundation is assembling in honor of Marion, please send your input to Jordan.Giles@cholangiocarcinoma.org by tomorrow.
Regards, MaryJuly 27, 2018 at 7:21 pm #97312bglassModerator
The news about Marion’s passing is such a deep loss for our community. Like many, I benefited from Marion’s expertise and advice in my early months dealing with this cancer. Marion was relentless in seeking out the doctors, researchers, clinical trial sponsors and anyone else who knew about cholangiocarcinoma, picking their brains, and using what she learned to benefit all of us. She was passionate in bringing patient and caregiver perspectives into research discussions. I will miss her.
The Cholangiocarcinoma Foundation is collecting testimonials for a tribute on Marion’s work. A notice is posted on the Foundation’s Facebook page with instructions on how to submit input, if you would like to contribute.
Testimonials should be provided to Jordan Giles at Jordan.Giles@cholangiocarcinoma.org by Monday August 6.
Thanks and regards, MaryJuly 24, 2018 at 3:19 pm #97303beatrizParticipant
I am tearing up as I am reading this and now I have my answer of why Marion never replied to my last email. I had a bad feeling and she has been in my mind lately.
Marion was an literally an angel here on earth when I was taking care of my father who was diagnosed with Cholangiocarcinoma. She was fundamental in teaching me about all the terms and all the logistics that one needs to now with this stupid disease. She was there to console me when we had an aborted surgery and when my father finally made his transition.
I really hate cancer and everything related to it, but I know that all of us are better caregivers because of visionary people like Marion and the founders of this foundation. In her memory and in the memory of all the loved ones that have passed lets keep being vocal. I don’t know which mountain top I need to get on to scream for better and early screening methods, for complementary and alternative treatments, and for more research on Cholangiocarcinoma since there seems not to be not that many targeted treatments.
So lets continue Marions legacy of advocating each other and lets keep hiking and screaming from those mountain tops so healthcare providers and pharmaceutical hear us loud and clear that we need better Cholangio screens and treatments.July 23, 2018 at 8:47 pm #97298EliParticipant
I am heartbroken by this news. Marion was a wonderful, selfless woman and a powerful advocate for this community. She was a shining example of how to give to everyone and make a difference. Rest in peace.July 23, 2018 at 3:32 pm #97296spokanemomParticipant
Marion was such an amazing advocate and she made a positive impact on so many lives. I am grateful for her generosity.July 22, 2018 at 11:08 am #97295positivityParticipant
I am so sorry to hear this news. When I joined this forum almost a couple of years ago, she was one of the first to offer support. I even had a telephone conversation with her regarding an issue. It takes people like her to help and make a difference. It is overwhelming to deal with an illness such as this, but a community with people like her are an immense help. May she be in peace.July 21, 2018 at 6:12 pm #97289debnorcalModerator
To our Cholangiocarcinoma community,
We were just heartbroken to hear of our dear Marion’s passing. When Mike was first diagnosed in late 2014, Marion reached out to us with encouragement. She guided us to the Foundation’s “Newly Diagnosed” page and the list of top CC treatment centers. When we waivered about leaving our local community doctors, Marion, in her characteristic diplomatic yet urgent manor, convinced us to get expert second opinions. This action ultimately led to life saving, curative surgery for Mike.
Over time, we got to know Marion better, and we were proud to call her our friend. In the nearly ten years that she supported the Cholangiocarcinoma Foundation, the last seven as Chief Advocacy Officer, she has supported countless patients and caregivers on this discussion board with encouragement, spot-on advise, and ideas on where to get information outside her vast range of knowledge. Marion knew everyone in our Stakeholders community – the doctors, nurses, researchers, and so many of the patients and caregivers. She was a powerful force of nature, and thousands of us have benefitted from our connection to her.
It is a sad irony that, after advocating for our foundation and helping so many of our patients, she should succumb to cancer herself. As we all know too well, though, cancer doesn’t discriminate.
In the eleven years since Marion lost her husband, Bruce, to CC, our community’s knowledge and treatment tools have advanced considerably, with many more long term survivors now. Marion was an important contributor to this progress. Our hope is that her memory and legacy inspires us all to keep raising awareness and raising funds for research so that soon this rare cancer becomes a highly curable cancer.
Debbie and Mike LaxJuly 21, 2018 at 10:43 am #97285gavinModerator
Horrible horrible news to say the least but I knew that it was coming. I was last in touch with Marion through email a few weeks ago and she told me that things had progressed a lot to this point.
I came here 10 years ago when my dad was diagnosed and Marion was the very first person to respond to my introductory post on the boards. Since then we became good friends and must have exchanged thousands of emails over these years. She helped me enormously through everything as she did for thousands of people on these boards throughout her time here. Most people here now and over the years on the boards most probably will not have fully understood the impact that Marion had in helping to fight this cancer as the work that she did away from the boards was enormous to say the least. Meetings, committees of various types, conferences everywhere, steering groups, advocacy, presentations etc, the list of what she did and the amount of work that she did for years for all of us behind the scenes is huge and her impact on fighting this cancer will never be forgotten, as will Marion never be forgotten.
So proud to call you my friend Marion, Rest In Peace. You will be sorely missed by a ton of people.
GavinJuly 21, 2018 at 8:47 am #97284darlaParticipant
Marion was so supportive and helpful to me when I lost my husband to CC years ago. She was a wonderful woman with a heart of gold. She will be greatly missed.July 20, 2018 at 1:40 pm #97282herculesModerator
It is with great sadness that I will share the news of the passing of our long time moderator and dear friend Marions aka Marion Schwartz taken by Lung cancer two days ago. She was a marvelous voice on this forum, and I am hurt and saddened by this news. It was posted on the facebook warriors group, and I am sure more details will follow
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