Robert Richard Tollen
TOLLEN, ROBERT RICHARD, of Key West, FL past away peacefully in his sleep on February 1, 2017. He was immediately put in a cryogenics tank as he wished. He is survived by his wife Kayla, mother Nancy, sister Carole, children Rebecca and Meyer, and grandchildren Isabella, Julie, and Leo.He helped so many people with medical issues. He was a Mensa and true gentleman. RIP
Published by the Miami Herald on Feb. 3, 2017.
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92 Entries
My memories of Robert remain strong. Four years is a long time in some ways but short compared to how long I knew him, learned from him, and watched as he helped so many. Not even his mind could calculate a decent estimation of the vast aggregate number of years he added to others' lives.

Not easy either to identify for this little submission the category of our relationship. "Friend" understates even more than it overstates. "Acquaintance" horribly understates. Robert was surely a very significant other for me but of course not Significant Other as the term connotes. My choice among the options, if I could excise the non-factual "military," would be Served Together. Among the actual options, I'd have most aspired to Co-worker, but that would greatly exaggerate the amount and impact of my work. Thus, I choose Student. Literally true as I studied so many of his posts, both general and individually addressed to me, and I learned much more from Robert the teacher than those from the formal classroom.

Ever grateful,
Dan Levy
Daniel Levy
Student
January 28, 2021
Time goes by so fast. Hope you Kayla and family are doing all right. My thoughts are always with you.
Suzanne Guenoun
Friend
January 29, 2020
My deepest condolences and love to his family.
He was a fabulous human being who helped me tremendously with my Dx.
God Bless and may he rise some day again.
Marilyn Oslander PV 2010
January 9, 2018
Dear Carole and Kayla,

I just learned of Robert's passing. I am so sorry to hear this; I had hoped to meet him one day. He was clearly a very intelligent and caring person and made the best of his situation by helping others.
I really hope we can meet, sooner rather than later. I heard about this from our cousin Laura Tollen in SF. I am so sad, Robert was a dynamic person.
Your cousin Cindy Tollen in Arlington, Ma.
August 11, 2017
My heart goes out to your family. Robert was very kind to listen to me if I worried about my symptoms and was very knowledgeable. He was kind and cared about strangers. He will be missed!
Rachael Vetter
March 23, 2017
My deepest sympathies to the family for the loss of an obviously dear and intelligent man. When he disappeared from the list, my heart broke. His newsletter meant so much to myself and so many others. It was a unique and important resource for which I am grateful.
Peace to all,
Adrienne Austin
March 22, 2017
Robert was very helpful to me when I was first diagnosed with PV. He was precise with information and direct with suggestions. I followed his advice. I believe my PV experience was so much better thanks to his kindness. My sincere condolences to his family. Mairead Porter
February 12, 2017
Robert made a positive impact on my life with PV. Thanks to Robert's posts on MPDSupport I had links to vital information at my fingertips, as well as, received some good advice. Robert was a true champion and will be missed. Karen PV 2005 JAK2 +
Karen Parker
February 8, 2017
Kayla and the rest of the family. ..deepest sympathy to you at this time..thinking of you.
Angie Kohls
February 8, 2017
Dearest Robert Thank you for being a calm steadying voice in my hours of panic and fear.RIP
Richard Albert
February 8, 2017
I read for years posts from Robert. He helped so many people and he comforted so many people in his posts. Robert is a selfless person. we Will miss you
Christopher
February 8, 2017
He will be missed by all of us who shared a diagnosis under the MPN umbrella. My condolences.
Sara Hayden
February 7, 2017
Very saddened to hear of Robert passing away, never had the chance to meet this feisty and strong advocate for MPN but having PV he was a friend I will never forget. He left his mark on so many of us
Carlos Garces
February 7, 2017
My heart stopped for a moment when I learned of Robert's passing. Although we never met, I thought of him as a friend and an advocate. We will miss him terribly, but are so very grateful for his tireless efforts on behalf of our MPN community.
Kathy Masulis
February 7, 2017
My sincere sympathy to Nancy, Kayla, and the rest of the family. Barbara Epstein .
February 7, 2017
My sincere condolences to the Tollen family. Robert helped so many of us in the MPN community, and he will be greatly missed.
Joann Phillips
February 6, 2017
I am so sad to hear about Robert passing he helped so many people including my self he was the first person on the news letter to reach out to others and help them understand their diagnosis he helped so many people he will truly be missed.
Nancy Calvillo
February 6, 2017
My condolences to Roberts family. He was a real comfort to many in the MPN community. My thoughts are with you all.
Helen Parks
February 6, 2017
Sincere condolences to Robert's family, who shared him with the MPN patient community. His diligence and tireless advocacy for patients to take charge of their health care is lasting gift. May his memory be eternal.
Marina Peed
February 6, 2017
my condolences to Tollen family.
Phyllis Snyder
February 6, 2017
RIP Robert Tollen. A great loss. Thank you for sharing your wisdom.
Lawence Stephens
February 6, 2017
So saddened to hear of Roberts passing. He is a friend whom I have never met but has been a constant companion on my own MPN journey. I thank him for all of his support, advice and inspiration. May his soul rest in Peace.my thoughts and prayers are now with his family.
Val Parker
February 6, 2017
Robert gave his knowledge freely. He was so smart and helped me through my early disbelief days. He gave me hope. I miss him. Condolences to his family.
Marilyn Mattei
February 6, 2017
You helped us all so much! There are no adequate words. All I can say is "thank you" for saving so many lives!
Nan Walton
February 5, 2017
I just heard about the passing of Robert. I am deeply sadden as I have know Robert since he was born in Philadelphia and lived on "D" street,, My heat goes out to his family and especially his mom Nancy steve Lapin
February 5, 2017
Robert, you were such an inspiration and source of knowledge for patientens with MPN. Thanks for all effort you have put in it. Hope you already metsome of our MPN family members that have passed away.
Dolf van den Berg
February 5, 2017
I'm Shocked and saddened to hear of Robert's passing. Blessings to his family. I hope eventually you can find comfort in knowing what an amazing legacy he left. He helped so many people like myself who went online seeking answers. He welcomed me to the MPN community with open arms (7 years ago) and always had well researched practical answers and solutions for my many questions. You will be missed Robert. Rest in Peace
Lori Lynn
February 5, 2017
I am deeply saddened by Robert's sudden and unexpected death. Robert and I communicated and shared our personal lives over the past 25 years almost on a daily basis. This was a shock. My heart goes out to Kayla, Meyer, Rebecca, Carole, Robert's mother Nancy, and the grandkids. Words cannot properly express the impact of the loss. I will miss you, my good friend Robert.
Lawrence Fisher
February 5, 2017
The California Tollens send love and sympathy to the whole family.

Ellen and Bob
February 5, 2017
I recall that Robert referred repeatedly & lovingly o his wife Kayla and the family).I am forever grateful to him for my awakening as a pv patient I don't recall how I found Robert's list but it happened as my plts were soaring.Robert helped make me an active patient and I soon put myself in Dr. Silver's hands. When I started intron and was anxious about potential side effects, Robert gave my advice I've since often shared with others: try to think of any aches and pains as the interferon at work.

I am saddened by Robert's passing and will always be grateful for the help he gave me and so many others.

Dan Levy
February 5, 2017
So sorry for your loss. He helped a lot of people.
Morris Leibovitz
February 5, 2017
Please accept my condolences - he was an admired member of our on line group

I will keep all of you in my prayers

WRm regards
Ronni Dobkin
February 5, 2017
So sad to read this
My condolences to his family and friends
R.i.p. Robert
Thea Neelen
February 5, 2017
I will miss you Robert, you were a source of support and encouragement for those with MPN.
Lubna
February 5, 2017
You will be sadly missed! You helped so many people on the MPD support site on FB!
Karen Laws
February 5, 2017
Am deeply saddened by Robert's passing. Like many others, I was helped by his wise advice. Rest In Peace, friend.
Stan Moore
February 4, 2017
HI KAYLA! ALL MY CONDOLEANCES ON THE LOSS OF YOUR HUSBAND. MY PRAYERS ARE WITH YOU AND YOUR FAMILY. YOU AND I WERE FRIENDS AND HAVE LOST CONTACT WITH EACH OTHER. I NOW LIVE IN AVENTURA, FL. THAT IS HOW I READ THE OBITUARY AND FOUND OUT ABOUT ROBERT MAY HE RESTS IN PEACE. I HOPE YOU REMEMBER ME. I AM SUZANNE GUENOUN/AZRAN, MOTHER OF BRIGITTE AND KAREN.
Suzanne Guenoun
February 4, 2017
Sincere condolences,Robert will be missed..
Bernice Starkman ,post ET MF
Gord Starkman spouse
February 4, 2017
Sending my prayers and heartfelt condolences to his family and friends. Robert will be missed. May he rest in peace, comfort and love.
Susan Mars
February 4, 2017
He was truly a good man. A friend I never met, but one that my wife and I were grateful to have. We will miss his insight.
Frederick Boyles
February 4, 2017
So sad to read this...I just lost my inlaws 11 days apart and can't even truly grief them but Robert!!! has been our Mentor on the MPD for yrs..helped us all...God bless his family and friends..RIP...
Linda
February 4, 2017
Condolences to Robert's family and friends from one who read and valued the insights he provided to those of us with MPNs.
February 4, 2017
RIP Robert. You will be missed. You have helped so many of us on your MPD site with your knowledge and insight. My sympathy goes out to your family and friends.
Linda Dawson
February 4, 2017
I am shocked to hear the sad news.
You have my deepest sympathy.
Nick Aelbers
February 4, 2017
He was a true believer in the truth that "The Median is Not The Message ". His spirit and his shared wisdom will live on.

Perhaps in centuries to come he will live again
February 4, 2017
What a shock it was to read about Robert Tollen's death. He will be greatly missed, he helped so many of us by sharing information about our MPN's.
My prayers and sympathy to his family and friends..RIP, Robert
JimiLee Weber
February 4, 2017
So sad to see this as I woke up this morning. Condolences to his family. I will miss his knowledge and help in the MPN group.
Carla
February 4, 2017
This news breaks my heart! It was Robert, through the many posts, videos and one face to face conference who helped me understand all of the related medical issues that come with MPNs. It was he who inspired me to get the best advice from a specialist. His generosity and caring for the plight of others set him apart. May he Rest In Peace. And, may God Bless his family.
Karen Rowe
February 4, 2017
Rip Robert. Thank you for your support when required. You will be missed.
Sue Attard
February 4, 2017
Rip Robert. Thank you for your support when required. You will be missed.
Sue Attard
February 4, 2017
RIP Robert. We have lost so many MPD Warriors in the last 12 months. Watch out over us left down here. Condolences to your family
Patti Jordan
February 4, 2017
I will miss you, Robert. I did not always share your views on things, yet I always appreciated your presence on-line and your willingness to engage thoughtfully and passionately in defense of your point of view. My condolences to your family and friends.
Bob Watkins
February 4, 2017
It's a sad day for the MPN Community, we mourn the loss of one of the 'Good Guys' and I offer my deepest condolences to his family and Friends, of which there are so many. Rest in Peace Robert.
Richie Stone
February 4, 2017
I am so appreciative of his commitment to the MPN community for all those years when we really had nothing.
You will be missed Robert Tollen.
I wish his family peace in their hearts always.
Bobbi Rubenzahl
February 4, 2017
My condolences. Robert was always a great source of information for those of us with MPN'S. RIP
Patricia Rushin
February 4, 2017
My sympathy to the family. I lost my mom to complications from myelofibrosis and Robert was always a source of helpful information and advice to me. May he rest in peace.
Sherri Pruce
February 4, 2017
My sympathy to the family. I lost my mom to complications from myelofibrosis and Robert was always a source of helpful information and advice to me. May he rest in peace.
Sherri Pruce
February 4, 2017
My sympathy to the family. I lost my mom to complications from myelofibrosis and Robert was always a source of helpful information and advice to me. May he rest in peace.
Sherri Pruce
February 4, 2017
My sympathy to the family. I lost my mom to complications from myelofibrosis and Robert was always a source of helpful information and advice to me. May he rest in peace.
Sherri Pruce
February 4, 2017
My sympathy to the family. I lost my mom to complications from myelofibrosis and Robert was always a source of helpful information and advice to me. May he rest in peace.
Sherri Pruce
February 4, 2017
We in the MPN community owe Robert Tollen a huge debt of gratitude. He donated so much of his time and energy to make our lives better by giving us information we needed to cope with our medical problems. You were a wonderful man Robert, may you rest in peace. We love you and miss you.
Ellen Cooper
February 4, 2017
R.I.P Robert, you will be missed by many, Condolences to the family, Robert was a great help to me with PV.
Laurie Prather
February 4, 2017
Prayers for peace and comfort to Robert's family. Robert helped educate and inform others all over the country and the world. He was a blessing to many and will be very missed.
Jodi
February 4, 2017
He was a source of inspiration and a wealth of knowledge which he shared with us who have similar illnesses. I followed him for twenty years. I extend my most heartfelt sympathies to his family. He will be greatly missed.
February 4, 2017
Robert Tollen, I have known you through the "wealth of knowledge" you have shared on the MPD- FB site!! Your 30+ year battle with this horrible disease has always given me encouragement. that with knowledge we can stay on top of our rare disease!! Because of your knowledge you have helped guide me through several "life & death" episodes with my husband!!
I pray that on your precious FB MPD site we can continue "your" work and together "we" can share info with the "new-bees" on this site.so that we can continue to help one another!! I pray that the person/persons you left in charge of this site: MPD-Myeloproliverative Disease Support Group will help us to HONOR you, Robert Tollen by sharing all that you have shared with us.... Rest In Peace my friend.we will all continue your work.our work to teach people about this rare disease!!
Lorraine Maguire
February 4, 2017
My condolences to family. Such sad news on your passing Robert,you were an inspiration. Rip.
Margo O connor
February 4, 2017
Robert was a true Gentleman in every way and helped so many he was an inspiration my condolences to his loving family
Taylor Anderson
February 4, 2017
I am so sad and shocked to hear of Robert's passing. My thoughts and sincere condolences go to his family and friends. As a fellow MPN patient I will always be grateful for the information, help, support and time he gave. RIP Robert. xxx
Diana Campbell
February 4, 2017
My deepest condolences to your family.Thank you for making my MPN journey a little easier you will be truly missed .
Elizabeth jones
February 4, 2017
RIP, thank you Robert Tollen. A life well spent in the service to others.
Peggy
February 4, 2017
Very sad, loved reading his very useful information on MPN in the Facebook group RIP Robert xxxx
Shirley Docker
February 4, 2017
Robert Tollen was dedicated to helping those of us who have MPN's. He was always up to date and encouraged us when we needed encouragement. I am grateful for the years of his guiding us on the FaceBook page he created. Thanks for the years of service Mr. Tollen.
Dixie Campbell
February 4, 2017





omg
Robert was kind to me when i needed help He was so interested in my problem and made me feel as if I mattered.
For his family, may you find peace in knowing how special Robert was to many of the people who needed him. My hope is that your loss is swift, and your memory of the happy times you shared replaced with love and laughter
February 3, 2017
So shocked, did not know he was in danger of leaving us. I was new to the group but he offered so much valuable information. Rest in Peace. God Bless you and your Family. ❤
Christina St. John
February 3, 2017
R.I.P. dear Robert. So very sorry to the family. He helped so very many in the MPN group. He will be missed.
Linda Bartos
February 3, 2017
My favorite person to debate with, will miss you my friend.
Marc Broxmeyer
February 3, 2017
I am deeply saddened to learn of Robert's passing. My sincere condolences go out to his family and friends, as well as all the people with MPNs that he labored to support and counsel. I was fortunate to have found Robert and his online support group when i was diagnosed with PV 11 years ago. I will be forever grateful for his guidance and support.
Michael Goldstein
February 3, 2017
R.I.P. Robert. You were a help to all of us!
Pauline Schreffler
February 3, 2017
Rest in peace Robert Pat Malavasi Mpn friend facebook
Patricia Malavasi
February 3, 2017
He was a great source of information and solid advice. My condolences.
Bernadette B
February 3, 2017
Such a sad loss for his family and friends. Heartfelt thanks to Robert for his endless support and knowledge regarding MPN's. He was a true gentleman! RIP Robert!
Jenny Stewart
February 3, 2017
I only know Robert through the MPN group, he gave us all wonderful knowledge on our disease. He will be missed. Prayers and condolences to his family. RIP Robert
T Kakarigi
February 3, 2017
Heart felt sympathy to all Robert's family, RIP and thank you for all your support through the Myeloproliferative disease support Facebook page
Sharron Wright
February 3, 2017
Prayers to Robert's family and friends. He will be missed. I know I will miss his help in the MPN group.
Lynn Scholl
February 3, 2017
Prayers and condolences to Robert's family and friends. He helped so many of us with MPNs, he gave great comfort and advice. I'm truly grateful for him and so sorry the world has lost him.
Taralee Jayaraman
February 3, 2017
Robert you were a hero to all of us. Your genius & kindness will be greatly missed.
Linda Zapico
February 3, 2017
He helped me more than he will ever know in the MPD group. So heartbreaking to hear of his passing. May he rest in peace. He will be missed by so many.
Felisha Johnson
February 3, 2017
I am so shocked and sorry to hear of Robert's untimely passing. He was truly a pioneer for MPN diseases and kind and generous. You will be missed by us all. RIP. Linda Zapico
Linda Zapico
February 3, 2017
He was to me both an inspiration and a guide. He gave many the courage and the knowledge to reach for both hope and good health in the face of a chronic illness. Be at Peace, my friend.
Jill Zaitchick
February 3, 2017
He really helped people with MPNs So sorry for his families loss and for our loss too. RIP
Zeta Charania
February 3, 2017
In loving memory of a wonderful person. We will love you and miss you always.
Jeannie Rolland
February 3, 2017
My sincere condolences.
Alisa
February 3, 2017
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