Marion and I worked together daily for over 10 years building the foundation and we've talked often since her retirement. She worked with many of you over the years to make sure the patient voice was considered in all endeavors and she admired the way you treated “her” patients. She took great pride in her work and considered you friends and colleagues.
Today, at CCF we will be thinking of Marion, all she accomplished and all those she personally shepherded through life with compassion and great tenderness. She had a wonderful gift that she shared with all of us. She was and will continue to be an enormous blessing to our community.
Love to all,
Stacie C. Lindsey
President & Founder
We will all treasure great memories of Marion and her passion for improving care for patients with cholangiocarcinoma. Deepest condolences to her family.
Dr. Lewis Roberts
Thank you for sharing the sad news. Marion was a remarkable advocate, passionate voice and a great human being. She will be dearly missed; her contributions and legacy will live on!
My deepest condolences to her family including her extended family at CCF.
Dr. Tanios Bekaii-Saab
Marion will be dearly missed. She was a true champion for cholangiocarcinoma patients.
Dr. Mitesh J. Borad
Marion’s great work at raising the profile of cholangiocarcinoma was internationally-felt and I, amongst other in the UK, will remember her fondly. My deepest condolences to the Foundation and especially to Marion’s family at this time.
Dr. Juan Valle
So very sad to hear this news.
I know we have all missed her voice at CCF (along with on the NCI HB TF and so many other places that Marion made a difference) these past months, but she leaves a great legacy in the enduring work of CCF and the advocacy community.
Please add my name to the many who will miss and remember her!
Dr. Katie Kelley
She certainly set the bar high for patient advocacy and it was an honour to overlap with her on the HB task force and the CCF.
My sincere condolences to CCF and to Marion's family.
Dr. Jennifer Knox
Marion has done a lot to the cholangiocarcinoma community. My deepest condolences to her family.
Dr. Andrew Zhu
What a lovely woman! Such a passionate soul. Heartfelt condolences to her family.
Dr. Laura Goff
I am so very sorry to hear this sad news- we went to dinner- she, her son and I -last year and chatted about so many things, her life and love. Her passion in everything she did came through no matter how brief any ones interaction was with her. She inspired people and was open and welcoming to everyone.
It is a honor for me to have met you and her and all the wonderful people both on and not on this mailing through our common goal. To me CCF is like a temple or shrine and we all have the greatest respect for what you have done to bring us together. Please convey my condolences to her family.
Dr. Renuka Iyer
Marion was the first person I connected with at the Cholangiocarcinoma Foundation. Marion took me under her wing and taught me as much as she could about Research Advocacy. She was a wealth of information, I could always count on her to help me with whatever questions I had. She took me to my first conference and taught me the ropes. I will always remember her fondly when I look at the poster sessions. She was an amazing moderator for the discussion board and helped countless people. Marion is the reason I am where I am today, a Research Advocate for the cholangiocarcinoma community. I hope I can live up to her expectations and give back a touch of all she was able to give to this community.
Thank you Marion, for everything.....
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.
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.
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.
Marion was such an amazing advocate and she made a positive impact on so many lives. I am grateful for her generosity.
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.
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 Lax
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
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.
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
First off, I want to say thank you to everyone for reaching out to us, pitching in withy son’s care, providing an endless supply of empathy, and condolences to our family, from the diagnosis of my mother’s fatal cancer until her death this July. She under a week shy of her birthday, she would have been 69.
Similar to having a child, I don’t think anything prepares you for the death of a parent. My mother and I were incredibly close, literally and figuratively; she was my best friend, my fierce advocate. Throughout my life, there had never been more then 50 miles of distance between us.
Within that 50 miles we would talk daily, color each others hair, share outfits, discuss politics, family gossip and everything else you could imagine fitting into our daily conversations. It was a constant banter, an endless stream of calls through out the day as one of us had a thought, Idea, opinion of the smallest of things to the most challenging. The work that was involved as mother and daughter to get to a place where we could be so incredibly transparent, living and honest with eachother was not easy, but it was absolutely the most rewarding.
I feel so fortunate to have had a mother that grew so much with me; she was never static, or unforgiving, she was dynamic, fluid, loving, selfless, and had a growth mindset. For 43 years we grew up together.
I know I will miss her forever. There’s no getting around it. And I don’t want to. I don’t think there ever will be a time when I will not want to call her to share all the little silly moments in my life that mean zero to everyone else, but meant so much to her.
When she was diagnosed with late stage lung cancer, she kept it from me for two weeks (a lifetime in our court!). And when I found out, I screamed a string of curse words (I won’t repeat). I could not believe that it would be her turn—to give you some context in the last ten years, Sean and I buried: my father, stepfather, both grandmothers, our last grandfather, I somehow avoided death, but at times I wanted to die from the cancer and the treatment I had, and now it was her turn—don’t people get a break?
My brother and I swore we had PTSD by this point and honestly really weren’t sure how we’d come out of this one.
So I spent every moment I could with her, every moment I could steal, I would take.
Eventually the once vibrant woman that I loved more then any other, started to slowly fade away, so many goodbyes during that time: goodbyes to planning for tomorrow, little things like shopping, and long conversations, until we had our final goodbye, with her kids surrounding her, holding her hands, kissing her forehead for the last time.
But we did it, all of it with full intention, honesty, and some bravery on all our parts—especially moms, she was so brave.
I didn’t think I would want to live without my mother. But After her death, I knew I would and could go on, if I have learned anything from so much death, it’s that we are just a short click away from our own. Mom would never want me to dwell on her death. She’d want me to process it and move on quickly and (with German efficiency). And I am, she’s made me stronger for it.
And I don’t mean to say there won’t be extraordinarily painful times, the kind where you don’t want to get out of bed, where you feel dehydrated because the tears won’t stop rolling down, or just the low grade sadness that clings to some days with the horrible reality that she’s just not here anymore and there is no way to reach her...and I could, always reach her.
So with all of that, we will go on, like most do, and maybe someday it will get less painful, or maybe it won’t. And we will just have to live and make the most out of the moments we have together.
What an incredible woman, mother, advocate, and friend. Words don’t express my gratitude for all that she has given me.
Much love to you all,
My heart is very heavy for the loss of my friend, Marion. Marion’s husband lost his battle with Cholangiocarcinoma shortly before my Jacques lost his. She was involved with the Foundation, and we chatted on the discussion board while my Jacques was fighting his battle in 2006. In 2007, shortly after my Jacques passed, she convinced me to attend a conference in Orlando, with her and Stacie to represent the foundation. I was hesitant, but I went and I have been involved ever since.
Marion was an amazing woman, whom I spent lots of time with and learned a lot from. Her work with the foundation was amazing. Rest In Peace, my friend. You will be missed.
I am so very sorry to have learned about Marion’s death. She was a very wonderful person who was able to show empathy for every person she met – whether in person or in the Discussion Boards. She spent so many hours trying to help others who were cursed with this awful disease. And she always found a way to be supportive, comforting and consoling in a way that made each person feel unique. Marion was truly a treasure and I am honored to have been able to communicate with her over several years, including some special phone calls where she helped me through difficult times for Lynn and myself.
All my love and respect,
I remember first being diagnosed and finding the CCF Patient Blog. I was nervous to post anything so I just read for the first week. I finally made my first post and the very first person to reach out to me was sweet Marion. She made me feel so welcome and her extensive knowledge gave me a peace that I found someone who really cared and would help me. I always told her she was the full package, beautiful, smart, caring and her heart was so big. Fly with the Angels beautiful.
Peace, Love and Hope
My Dearest Marion,
I will never forget our phone conversation just a few weeks ago. We laughed, we talked and we cried, together.
I told you that I will never ever forget how you were by my side the entire 6 years with Teddy and his CC. We were novices in a world of CholangioCarcinoma, where hardly anyone had ever heard that word before.
You were there for thousands of people and you persevered with the powers that be to make Cholangio a well known word. I became a moderator because of you and every time I decided I needed a break I would call you after a day and say I could not stay away. I always felt very selfish because I honestly felt I got more back than I ever gave and I did it because of you.
I know you must be very happy because you are once again with Bruce. I also want to thank you for giving Teddy a kiss and I wait for the time to all be together again.
Save me a seat at Percy and Teddy’s restaurants so we can look down on others and see a world where CC has been cured. I love you my little Sister.
So much comes to mind when I think about Marion and how she helped me (and so many others) along in my CC journey and life in general. She was the voice on the CC discussion board of compassion and caring. At times when I felt the most hopeless and helpless she was there to walk me through, to have a kind word, to give encouragement, and always to build me up when I was at my lowest. She helped me celebrate my successes and commiserated with me during my lowest times. I will never forget her kindness. It was so natural for her and she was so genuine, I felt the world was a better place knowing she was just at the end of a text or email. And now the world is a little emptier without her in it. My thoughts and prayers are with her family and friends who are mourning this huge loss. She will be missed by many people that she hadn't even met but who read her kind caring words. May her memory be for a blessing.
About a few weeks after joining the forum, Marion was very helpful to me in facing this new journey. She offered excellent feedback and her number to discuss details. I was going through an overwhelming and stressful period when I contacted her by phone. She motivated me to be an advocate for my mom and if I found something to be awry in the medical system to take a stand. At that time there was so much pressure to move forward for an ERCP and we unfortunately went with a doctor less experienced as the main one was on vacation. She did not do a good job and it had to be redone a week later by the main doctor. Marion stressed the importance of talking to the head of the department or hospital and expressing the miscommunication and other issues we faced during the two week hospital admission. She also provided quick responses on the discussion board. We need more people like her, and I am glad to also be part of the group.
I found this board, and Marion, maybe 7 years ago when my dad was diagnosed. She was always one of the first people to respond to a post, offer empathy, words of encouragement, and advice. After my dad died, I disappeared from posting on the boards, but started to come back about 2 or 3 years ago. Again, Marion was the first to say glad to see you back on the boards, and offer words of encouragement. As I started becoming more involved, I spoke with Marion on how to volunteer, and she thought of everyone and how one could best fit in to help in some way.
I will always remember Marion as a kind, encouraging person in the face of very challenging circumstances. Her strength to the Cholangiocarcinoma foundation will be greatly missed.
I am so very sorry to learn of Marion’s passing.
There is absolutely no doubt that Marion was a true ‘warrior for the cause’, passionate in all that she did for cholangiocarcinoma patients everywhere, and an invaluable asset to the foundation.
Sending sincere and heartfelt sympathies from all at AMMF to you, everyone at the foundation and, of course, to all Marion’s family.
With kindest regards,