Below are the details relayed by Dr. Brian Koffman
Friends,
It is with a heavy heart that I am sharing that our CLL comrade in arms, Pat Kennedy died on July 2nd.
Her brother told me of her completely unexpected sudden death from a complication of a procedure, totally unrelated to CLL. Her family was with her when she passed.
Pat was a bright light guiding others on the forums and through her many online and personal efforts. Personally I referred other patients to her for her guidance. She was a critical thinker, engaged, opinionated, and generous with a strong sense of justice.
She will be badly missed by many, including Patty and myself.
I have asked her brother for a mailing address where we might send our condolences.
Thanks to Len (Lankisterguy) in NY for starting the questioning concerning her sudden disappearance online. That says something about her reach and influence.
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP and Chief Medical Officer - CLL Society, Inc.
I first "met" PKenn on the CLL Forum approximately 2010, where she and fellow Californian- FoothillLynn / E-Lynn contributed many replies and experiences that helped me climb the steep CLL learning curve, eventually those two became the "Gazyva Girls" some of the first patients to be treated with Gazyva / Obinutuzumab.
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Pat became a member here on HealthUnlocked CLL Support in 2012 as I did in 2013. We both were later asked to become Volunteer Moderators to help provide accurate and timely replies to postings and questions from the membership.
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I was fortunate to meet Pat in person in 2015 at the CLL Canada conference in Niagara Falls along with two other icons in the CLL support community Cllcanada Chris Dwyer and bkoffman Dr. Brian Koffman.
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I echo Dr. Brian Koffman's words: Pat was a bright light guiding others on the forums and through her many online and personal efforts.... She was a critical thinker, engaged, opinionated, and generous with a strong sense of justice. She will be badly missed by many.. including me.
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Len
Written by
lankisterguy
Volunteer
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Thanks for this notification Len. We are deeply saddened to lose our valued friend and volunteer, Pat, who was a leading luminary in the blood cancer movement and a real force to be reckoned with. I learned at an early stage that Pat had a strong sense of justice and was relentless in pursuing it for the children she taught, the animals she dedicated herself to and the fellow patients she identified with and wanted to help. Pat was an educator, often in very deprived, disadvantaged and culturally diverse areas and her life was a giving, meaningful one. She was a tough cookie, as tall in stature as she was in personality and not one to unwisely tackle. We will all miss her knowledge and dedication and send sympathy and best wishes to her family and friends at this time.
I just wanted to thank both Len and Dr. Koffman for their heartfelt words in sharing this very sad news. I'm sure I will be one of many on HU who has looked back on the private messages I shared with Pat. In my case it was particularly in the first couple of years after I joined HU back in 2017. Reading those messages over again today I was reminded that she was always very responsive, clarifying, and helpful to me.
Any sudden unexpected loss such as this one brings with it a unique kind of sorrow, and I also wanted to extend my deepest sympathies to her family and friends.
My sincere condolences to her friends and family. What a difficult loss of a special woman. May her memories go on to bring happiness to those whom were fortunate enough to have loved & known her.🌷
Pat joined our community just over a month after it commenced, providing support for thousands of our members over the last 9 years. In her role as one of the inaugural members of our community support team, she did much to shape our community. Her passion for respecting member privacy (reflected in Pat changing her username from PKenn to MsLockYourPosts) along with her regular reminders to everyone about the importance of locking posts, has resulted in our community being in the top 5 of the 700+ HU communities in respect of keeping shared personal details private to just our community.
Pat worked tirelessly to have our top poster (still), Chris Dwyer (CLL Canada) recognised as a CLL CURE Hero. She touched and extended many people's lives through her encouragement to avocate for better health care, sharing her personal experiences in this regard.
Thank you Neil for that memory jogger and yes I have been hanging around here for so long and PKenn is certainly a name I remember as someone who always gave sensible advice.
I'm very sorry to hear this sad news. It seems so unfair and unjust for this to happen to her and so suddenly too.
I feel it would be a small comfort to everyone to be able to pass our condolences and appreciation of Pat's huge contribution to this group, and CLL in general, to her family and friends. I hope we are able to do that in the near future.
Thank you for letting us know. I am sorry to learn the news and my condolences to her family and friends. I benefited a lot from her posts initially at cllforum and later at this site.
Thank you, Len, for the difficult task of sharing this very sad loss with the forum. I can imagine how painful this is for you, Dr. Koffman and those who have partnered with Pat over the years in providing such excellent support and keeping us focused.
Certainly, it is impossible for me to think of her loss without the reminder of the loss of Chris as they were so close.
Thank you for posting. Pat was one of the first people I met in 2012 when I joined my first group the Cll Forum. We joked about having a Cll town for only Cll residence because others did not understand us. Also we dreamed of her winning the lotto and taking us all on a cruise. She was a great mentor. I met Lynn, Chris and others on that Forum too. They saved me with their support and knowledge. I was paranoid about RT and Chris sent me an email telling me to stop thinking about RT.
I lost my password to the Cll Forum and stumbled on HealthUnlocked. I don't remember how I found it however there were many familiar names here.
Pat will be greatly missed. My condolences and prayers to her and her family.
This really set me back. Three and a half years ago when I first joined HealthUnlocked, I heard from MsLockyourposts. She informed me I needed to lock my posts. I really appreciated her interest in keeping things in this community and not out there for the world to view. After that I always got a chuckle at seeing her do the same time and again for the newbies. Her passing leaves a hole in the heart of so many.
I am so sorry to hear this news. I didn’t know the background to Pat’s forum name but have been constantly reminded to lock my posts by it! May she rest in peace. Beryl
Oh no this makes me terribly upset. Whenever I made posts about my father and his CLL Pat would send me private messages saying she would help me find him doctors or even talk to him on the phone. Pat was such a kind and caring person, this really saddens me.
I am so sad to hear this news, when I first joined this group 7 years ago she was one of the first to reach out to me ,herself and Chris were so knowledgeable and i learnt so much from them ,she will be so missed ,condolences to her family x
So sorry to hear of her passing ….I only knew her as Ms lock your posts but I along with so many others benefitted from her caring and on target responses - We feel her loss and can only assume that her family and close friends miss her terribly already ….She was a Special person who gave so much to so many and will be remembered for all the good that she accomplished….
May her family and friends be comforted by the wonderful memories she left us all!
Thank you Brian, Len, Neil, NewDawn, and all of you for sharing. Pat had been telling me what a great group this was and I see how right she was. I first met Pat at west coast Lymphoma Research Foundation annual meeting around 2008. I asked someone going into the breakout session, "Can you tell me how to find Pat Kennedy" and he answered, "Look for the woman towering above others" or something like that and of course I spotted her right away. She did tower in so many ways. And I always felt she was a saint, so patient and willing to spend hours on the phone with everyone who needed her enormous well of compassion and knowledge. We did form the 2014 Gazyva Girl duo, although we never got our act on the air and only met by phone occasionally and more often by messaging of one sort or another. I had persuaded her to join the UK Stay at Home Choir, which has kept me sane during COVID times, but then I didn't hear from her. Pat had been a serious choral singer and choir director in several churches over the years. I see she has been described as opinionated, and I know that was meant in the best way. I love that while Pat was perhaps a bit more diplomatic than I, we both got almost kicked out from the same CLL groups for stating our beliefs and questioning some of the wishful silver bullet therapies and/or supplements. I'm finding it very difficult to use the past tense in talking about Pat as I know she lives on in the posts she shared, the private messages she sent, the many many phone calls she made, and the huge difference she has made and will make to so many. I spent a lot of time the last two days trying to dig up any information I could on where she was. The gut punch was calling her phone and hearing that the number was no longer in service. They got it wrong. Pat is still in service to us all. Rest in love dear friend, the taller more talented of the Gazyva Girls.
Beautiful words to share with us who remember Pat's interactions over the years. Thank you E-Lynn. Another bright light of our community has gone out and will be so sadly missed.
I like to think that if there is a heaven that Chris was there to welcome her.
Condolences to family and friends who knew and loved her.
I couldnt understand why things were different. New people and regular posters not here. I am so sorry there is such a sad reason she hasnt posted. She always gave so much help and kindness, Anne uk
I didn’t really come across her much, but you couldn’t miss that username! It’s impossible to hear of someone’s passing without thinking of the pain of those who will feel her loss the most. My condolences and well wishes go out to them, and thank you, Len, for letting us know. God bless, all.
This news saddens me greatly. She always replied to my posts with such positivity, calming my fears. She will be missed. Love and prayers to her family and friends.
Deeply saddened to hear of Pat's passing. She will be greatly missed by so many .Pat was the first person I reached out to when newly diagnosed and wanted to make sense of it all, seems so long ago now. Pat was always there for the recently diagnosed, in the early days without this forum and the information now widely available, Pat would email contacts to link UK advocates with UK patients that had entered the US on-line forums looking for help. In those days there was little information available outside of the US.
Pat was instrumental in the birthing of the on-line community here at HU to enable us all on this side of the pond to connect and support each other. While sharing her wisdom and strong principles here, Pat made sure she was here for everyone but especially those in the US, even when HU tested her patience and tech at times. With Chris and the admin team she helped establish the standards we all strive to achieve when helping others. She has passed on so much to to everyone in the community to ensure we can too. I am so pleased that I got to spend a little time with Pat and Chris at CLL Live in Niagra in 2015 , May we pass forward her lessons and principles' to others.
My condolences to all of Pat's friends, there are many who will be feeling a deep sense of loss.
My sincere condolences to Pat's family and friends and to the many people whose lives she touched. Really saddened by the news but also inspired by her generosity and spirit. X
Very sad to hear this news. I also "knew" Pat (and Chris) from the CLL Forum and appreciated their ability to bring hope without sugar-coating - a skill I find so valuable to our journeys.
It is such a sad loss, so unexpected and it is hard to take it in.
Thank you, Len, for reaching out to find out why Pat was quiet recently. I was hoping we would hear from her very soon...
I haven't met her in person but messaged with her and she was very caring, a strong advocate for getting the best help possible and had a strong sense of justice.
She advocated for Chris getting a CURE Hero award and it was a very special moment when she was able to be there when it happened.
I would like to forward my deepest sympathy to the family and friends, your your loss...
I was deeply saddened to hear this news. Thank you Len and Dr Brian bkoffman for sharing. I’d been concerned that we hadn’t heard from Pat recently, but it was a shock to hear she had passed away.
I never met Pat in person, but came to appreciate her friendship through various online chats. I had great respect for her and had hoped we might meet face to face one day. She was very caring, especially for the underprivileged in this world. She cared deeply about animals too, which resonated with me.
I believe she was also involved with a Breast Cancer India support group, but I don’t think it was a Health Unlocked group. If anyone knows anything more about that, maybe they could let her friends there know what has happened?
Pat had been on this forum ever since it started. It’s hard to believe she’s not with us any more. I feel a deep sense of loss...
Dr Brian Koffman bkoffman I believe has the original, you can click on his name/icon just above the picture and send him a message. Or reach him through CLLSociety.org
I’ve only just heard the news from Brian - I’m so gutted to hear about Pat. She was one of the first people to reach out to me when I found the international forums after diagnosis and has been such a good friend ever since. We became Facebook friends as well as meeting in person a couple of times (including in the photo Brian shared) after she took this scared then young Australian under her wing. Rest In Peace dear Pat - my only consolation is that CLL didn’t get you - you’ll always be the orginal bravest and kindest Gazyva Girl. My thoughts are with all your friends and family. Lots of love, Deb
oh my god. pat was so generous with me! in my early days of cll when i was so worried about all my markers, notch1 trisomy 12 and more, she actually offered to speak w/ me via phone and we did speak for several hours. what a great lady she was! so generous witty knowledgeable. kind. we need to appreciate each day, who knows when someone dear may be taken from us in an instant! rest well dear friend!
I am in shock and deeply saddened to hear that my friend Pat Kennedy has passed away. I had no idea that she wasn’t doing well and could not believe my eyes when I read this post (a day late). I have so many fond memories of Pat from our CLL LIVE conferences in Niagara Falls. I was most likely the shortest person at the conference but could always spot tall Pat in her red blazer. I remember asking someone to take our picture but they had trouble getting us both in the picture due to the great difference in our heights. I fondly remember walking through the corridors of the hotel and hearing familiar voices. My roomie Bev and I poked our head in the room to find Pat and Chris Dwyer along with several other members of the CLL group and next thing you know, there was music, singing and laughter.
My fondest memory is the “party crashing” lol!! I guess I was a bad influence and convinced a group of girls to come with me to the party in the next room to our conference. By coincidence, they were from the drug company we all wished we could get drugs from to treat our leukemia. I had chatted with them in the elevator going to our conference so the “drug company” people knew me. Well Pat and I put our CLL LIVE bags down on the floor, this would have given us away, and left them with our friends and off we went to the center of the dance floor and danced away! What fun we were having!! The guests at the party were cheering as we danced. Next thing you know, I get a tap on my shoulder and we were busted! The bouncer knew we did not belong to this group and told us we must leave. However, the “drug company” people thought we brought so much fun to the party and told the bouncer to leave us alone. What fun we had and Pat & I were forever remembered for being the party crashers.
Oh Pat, I miss you so very much and hope that you are in Heaven crashing all the parties! I will look for you later and will find you with your red blazer with your angel wings attached. I send my heartfelt deepest condolences to all of Pat’s friends and family and wish we were not so far apart that we could not pay our respects in person. Goodbye my friend; I will never forget you. Love from Janet O’Brien in the Ottawa, Ontario Canada area.
Dear Janet, I love the thought of you and Pat gatecrashing a party and dancing away, with your very different heights! Thank you so much for sharing those wonderful memories.
Any chance you have any photos of that gatecrashing dance you could share with us???
I never met Pat in person, but got to know her through this site. It was a terrible shock for all of us to hear she'd passed away.
What a lovely, heart warming image of Pat having fun. We hear so much of the difficult part of people’s lives on here that it’s wonderful to hear of carefree times. Thank you Janet and I’m sorry for the loss she’ll be to your life. We certainly miss her presence and friendship here.
I’ve just seen this post now & even though I did not know Pat I was acquainted with MsLockYourPosts who gave so generously to this forum . I am so sorry to hear of her passing, my deepest sympathy to her family & her Health Unlocked family . May she rest in peace . Emer
Thank you for posting and saddened to learn of Pat’s passing, and touched to read everyone’s comments here. She was a source of strength, knowledge and honesty during my earlier days with CLL, as was Chris Dwyer. Pat somehow made CLL feel clubby in the best possible way. Loved being in her club. Such a communicator and Pat seemed to know what was really going on with many of us because she keep in touch with so many. Rest In Peace, Pat.
If anyone is a member of any other forum that Pat was involved in I would love to get a copy of whatever tributes that are posted. Pat was involved with so much.
Also if there is anyone who would like to send kind words to her family and has not found a address or email to send it to, I can provide that information and make sure it gets to the family.
I knew / worked with Pat on several forums, and met her twice in Niagara Falls CLL Live 2015 & 2018. You may know of another friend Lynn S, E-Lynn here and FoothillLyn on CLL Forum. Here is Lynn's posting and my reply relaying her demise on that group cllforum.com/forum47/16218....
where she was ultimately banned, by an unreasonable owner/editor. Two of her best friends Chris Dwyer Cllcanada and Dr. Brian Koffman bkoffman were also banned. Dr. Koffman and his wife Patty are in the picture you wanted to capture along with the daughter of Chris Dwyer
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She was also a member of cllcfriends.com/search.php?... a group which is inactive, but I took the opportunity to post her obit there today.
I guess I should tell all of you how I know Pat and what part she played in my life.
I've known Pat for almost 15yrs. I was the Receptionist at her Vet clinic and like many became close friends by talking to her. She had a Love for animals especially the difficult, scary, feral cat kind of strays. She was a pro at trapping even the most elusive ones. She didn’t care as long as they were safe that’s all that mattered.
Pat was a retired lausd school teacher and taught in some of the roughest inner city schools. She enjoyed every minute of it and still remained close with a few of her former students on Facebook to she passed. When my daughter was in elementary school she helped me navigate the school system so I can get the help my daughter needed and just graduated High School last year. Then when my son started school she was right there again to make she things were done right.
She loved the Opera and has probably seen every play possible. She was a long time Choir Singer which she loved very much.
When my mom was sick she helped navigate my way through the healthcare process., was always there to explain lab results and suggest what she thought I should be addressing with her doctors. When my mom ended up in the hospital she was right by my side to help me through her passing. After my mom passed in 2015 she was always there to fill in when my mom couldn’t. She always told me I was the daughter she would have wanted to have. She was such a wonderful person. She talked so highly of her fellow Admins and Moderators in this group. This CLL group was her family and she loved helping everyone in it. Thank you for allowing me to read everyone’s condolences.
Thank you Amber for sharing with us your love of this very special woman and the memories that will remain locked into your heart .
We always feel a sense of loss when one of our community members leaves us, not always knowing why, so I am sure so many of us here are grateful to be able to pay a little homage to one many of us knew as PKenn and MsLockYourPosts.
Behind so many of our identities lie such special people and only sometimes do we find how special. So thanks to all for sharing, I am sorry for your and our loss.
I just read of this today on another post. I feel a deep sense of loss. She was wonderful for sharing what she knew, when I met her on another CLL site in 2015 and found her here on HU.
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