Legacy of Hope
Robert F. Carroll, Ph.D. — This past May, 15-year MDS survivor and AA&MDSIF Chairman, Bob Carroll passed away. His passing has deeply saddened our Foundation, as well as the many patients with whom he shared his contagiously positive attitude, effervescent hope, and great love of life. Bob was a truly an inspirational man. An educator, humanitarian, husband, father, and ambassador for the AA&MDSIF, he will be remembered by all of us as a man of integrity, dear friend, and advocate to thousands of families touched by his incredible optimism and courage.
In 1991, at the age of 57, Bob was diagnosed with Myelodysplastic Syndromes and given only about two years to live. He often said that moment changed his life because it was in that minute that he committed himself wholeheartedly to make life better for other people. “I consider MDS to truly be a gift. It is my gift because it has taught me that relationships with others are what's important in my life — nothing else.” It is this beautiful spirit and dedication to helping people that enabled Bob to beat his disease for so many years. While the details of his tireless acts of generosity and inspiration were unknown to many of us, the spirit that animated them is one we witnessed — and were moved by- every day.
Immediately after his diagnosis, Bob took the same step that many patients do — he searched for information about the disease. His research brought him to us, the AA&MDSIF, and immediately joined our team helping patients. For 14 years Bob worked on behalf of the AA&MDSIF; the past six as President, and, most recently, as Chairman of the Board. But it will be his unofficial role that we will miss the most — advocate, advisor, cheerleader, godfather, mentor, friend, and source of inspiration to staff and board members, patients and families, doctors and nurses, and to all of us fighting bone marrow disease. During his tenure, the AA&MDSIF expanded to offer services to patients around the world. His experience in Russia and Sri Lanka helped pave the way for the AA&MDSIF to become an international resource and assist patients and doctors with limited access to medical resources.
Bob left a world that is much improved because he lived in it. There are schools in Crimea and Sri Lanka that bear his name. There are patients alive because Bob found a way to get them medical supplies. There are hundreds of young people in his home state of Connecticut who are dedicating their lives to donating blood and platelets. And there are countless numbers of us who are stirred to fight the battle against bone marrow disease. This is Bob's legacy, which will stretch far into the future.
To honor this legacy, Bob's wife, Marie, and his sons, Robert, Jr. and Aric, have joined the AA&MDSIF board and staff to establish the Robert Carroll Legacy Fund to benefit the Aplastic Anemia & MDS International Foundation.
The Robert Carroll Legacy Fund is dedicated to Bob's passion for helping patients and his devotion to our mission of leading the fight against bone marrow disease.
The Robert Carroll Legacy Fund will raise money to increase patient support, advocacy, and research.
The Robert Carroll Legacy Fund will help save lives, help families, and give hope to thousands around the world.
Bob's spirit will live on in the AA&MDSIF as well as in each of us that carry his love and hope forward.
Sincerely,
Mariantoinette Carroll
Wife of 36 years
Sincerely,
Marilyn Baker, M.S.
President
Make a donation to The Robert Carroll Legacy Fund now by clicking on the 'Donate Now' button above.
Contact Marilyn Baker at baker@aamds.org or call her at:
(800) 747-2820 if you would like to discuss your donation with her.
Please be sure to read the many written tributes to Bob, and join us as we celebrate the life and work of this remarkable man.
Heartfelt Tributes…
He took our hope up to heaven.
Leticia Abracia
Aplastic Anemia patient, 4 years
Los Angeles, California
My name is Pamela Embrey and I am a MDS patient from Arvada, Colorado. I had the pleasure to meet and befriend this fine man beginning at the California conference. When we met again in my hometown of Denver he was a pleasure to talk with. Even when he was surrounded by other patients he always made time to talk to you. He answered my questions about a lot of my concerns pertaining to the disease and made it all seem positive. I could go on writing about him but there truly is not enough words in the dictionary to describe his compassion and intellect. Bless you and may you rest in peace for all the Mitzvahs you have performed.
Fondly,
The Embrey Family
I am fortunate to have shared with others the joy and privelage of knowing Bob Carroll. I have been involved with the AAMDSIF for 20 years and known Bob since I joined its Board of Directors. Bob was like a benevolent uncle to me, unfailingly sweet, supportive, kind, gentle, encouraging, generous and.....fun! I like to think I share with him the positive spirit that enables us to coexist with diseases like Aplastic Anemia and MDS and to use that spirit to encourage and empower others when they and their families are afflicted.
Bob's accomplishments throughout the whole of his life are impressive but I will remember him best for what he gave to our foundation, its patients, families and to me - his complete and loving self at every turn, in every way. He is undoubtedly already doing good in the Kingdom of Heaven.
Andrea Rossi Pecor
Our organization has been blessed to have Bob serve as our president as he was dedicated and unselfish to an extreme as exemplified in his last trip. He will definitely be missed but fondly remembered by all those who got to know him.
With sincere sadness,
Tony Sanfilippo
I am humbled and saddened to hear this news. He made a rich life, in all the ways that it truly counts, seem so possible. An amazing spirit. Would it be fitting for the Board to help underwrite a research grant in his honor?
Gloria Fitzsimmons
This is such sorrowful news. I had hopes after hearing his fever broke. Please let me know if there is anything I can do, anything.
Stephen King
I am so sorry to hear this news. My sincerest condolences on this loss. I met Bob only once in person, but he impressed me right away as a really amazing person and I know he did so much for the foundation and for so many people over the years. He will be sorely missed. Please let me know if there is anything I can do to help with the tributes in Bob's name.
All the best,
Tamir
This is a horrible news--- how it comes that we did not know that he got so seriously sick.... I do not know what to say--- this is an incredible loss. I have deep in my memory every meeting with him...I have his home number but would rather write a letter.
Dr. Maciejewski
I am devasted for all of us. Please let me know how I can help you.
Ruth Cuadra
I just learned of Robert Carroll's passing. How very sad. And, yet, I feel so fortunate to have worked with him even for a brief time. Steve and I also had the pleasure of meeting him at the patients conference in Denver last year. What an amazing individual. You and all of AA&MDSIF are truly blessed to have had him in your lives for so long.
Judith McGill
I was so shocked and saddened to hear this news. Bob was such a wonderful person and did so much for all of us. He definitely touched many of us here at Pharmion. Thank you for passing this on and I offer you my thoughts and prayers as I know you were all close with him.
Sue Garnett
I'm sorry to hear about the loss of your colleague. Wishing you and the rest of the AA&MDSIF all the best during this difficult time.
Jonelle K. Drugan, Ph.D., M.P.H.
Office of Science and Technology
National Heart, Lung, and Blood Institute
National Institutes of Health
When I learned of Bob's passing I experienced what most people experience, an odd silence while my mind raced back to the relationship that I and my wife, Trudy, had with Bob. Trudy and I met Bob and his wife, Marie, at an AAMDS conference in San Diego at least 8 or 9 years ago. Our relationship with the Carrolls was warm and friendly right from the beginning. As with most encounters with victims of this disease, people don't waste time with ancillary issues. They want to know what you have, how did you get it, where are you being treated, what is the best plan for recovery. Intimate details about each other's lives flow freely in an effort to find solace and compassion from other human beings.
I recall reading a quote from Bob about how important relationships are and he was right on. The first four of the Commandments that God gave told us how to have a relationship with Him. The remaining six Commandments dealt with how we should have a relationship with others. The point is that all we have that is truly important in this AND the next life is how we deal with “relationships”. It is sad that we sometimes forget this and move to “loving and worshiping things.” We also forget or ignore that these “things” don't have the ability to “love” us back. Bob understood that. Bob and I did speak, albeit infrequently, after the conference regarding Trudy's condition. Trudy passed away in 2001 and Bob and I spoke for the last time. He was compassionate at that time as he was on every occasion that we spoke. But, more importantly he was “always” hopeful. No one knows what the future holds, but for patients it naturally seems to be much more immediate and pressing. Bob knew that he had a problem and he also knew that the Good Book says that “...it is appointed unto man once to die and then the judgment.” Bob was going to “live” until his appointment came!
That is the legacy that Bob left. An understanding of the present and a hope for the future. We teach our kids how to live but no one teaches us how to die. Bob was a model for us all in that he exhibited God's grace and hope for the future and thereby gave all of us the courage to continue to grow in our relationships.
My prayer is that God will give Marie and the rest of the family the strength to continue Bob's legacy as they grow in their own circle of relationships.
Blessings,
Steve Day
I am very grateful for the tremendous contributions of Bob Carroll to the AA&MDS Foundation.
My Mother, RoseMary Hirbe also lost her battle with MDS this past year at the age of 72 on Jan. 13th, 2006. This organization has been a tremendous source of education and support. Bob's efforts will be carried own through this wonderful organization as a tribute and a lasting legacy to his memory. Our spirit lives on in our works and the timeless contributions we make to our fellow man.
Thank you and God Bless,
Marilyn Kostelnik, ARNP, FNP
Thank you for this tribute to a wonderful life, well lived. Please give my condolences and thanks to his family.
Sincerely,
Barbara Langan
MDS patient
I saw the “Subject Heading, re: the passing of Robert Carroll.” We are always shocked to receive such news, and I said a Hebrew prayer for him immediately, that he may rest in peace. My eyes became teary.
I spoke with him by phone a few times when I was going through the early challenging time with my diagnosis, in 1989. Even though he was so accomplished, he took time from his summer house to chat with me in the most warm, humble way. I was getting my first, and only transfusion so far, and he advised me what to do to be sure I was “safe.”
I was delighted to meet him at the Marin Conference a few years ago. I held on to “hope,” seeing all that he did in his life, with bone marrow disease.
I hope you can forward this message to his family, that I wish to honor his life, and the loving support he gave to me. I send them blessings to carry on in his memory, and wish lots of loving support for them during this time.
I thank you, Marilyn, for introducing him to me. As usual you are always there. May you receive many hugging arms around you, to heal from our loss of Robert Carroll. But I know you and others will create a way to honor his memory.
Love & hugs,
Naomi Blum,
LCSW
That was a lovely tribute to an outstanding man. (The Foundation) enjoyed his support and he, (the Foundation's).
Since I had that loss of a mate, I can understand this loss for his wife. Take care and continued success in the fight against bone marrow disorders.
Pat Hetland
May his gentle soul rest in peace. Amen.
Ajayi OI
Nigeria.
That is such terrible news. I was clearly shocked. Bob was truly great guy and a source of continual encouragement to us with MDS. I know how you must feel now and you have my heartfelt sympathy.
I am still in hospital for theAML, in fact today is day 42 and I am still hopeful that something positive comes out it.
Please take care of yourselves and God willing I will see you at the annual AAMDSIF conference.
Sincerely,
Gord Sanford
My deepest sympathy for you and the entire Foundation. It is indeed a great loss for all of us who benefited from his endless endeavors.
Sincerely,
Oweta Temple City, California
I stand with the family and the Foundation at this time, in the loss of such a visionary. I pray his peace in eternity and comfort in the now for his family and friends
Robert Thompson
Thank you for informing me of Bob's passing. Indeed, he was a remarkable man. I looked forward to hearing him at your conferences because he imparted such hope and enthusiasm to the patients and to their families. He was a warm, approachable man and a strong leader, whose experience and skills contributed to the foundation's strength and growth. He has left behind for us his values, ideas and vision, which will not be forgotten.
Jean Hopeman
Please except my sympathy on the passing of Bob Carroll. I did not know him personally, but your email touched me deeply. My father Ralph Bigger died of Aplastic Anemia and its complications. He, too, tried to keep going. It was a major battle for him, but he fought it bravely also.
Anyway, very touched by your email. Thank you for sending it!
Vickie West
What a profound loss! I only met Bob a couple of times, but what a kind, caring gentleman he was. My deepest sympathies go out to (the Foundation) and the family. Is there anything that I can do?
Blessings,
Robin
Thank you so much for sharing this with me. I was diagnosed with MDS one year ago and in that time I have gone through many trials. I still do not fully understand the disease and I feel tired most all the time. They have been able to keep my red blood cells up to about 11, but my platelets are still very low. I did not know this man personally, but I extend to his family my condolences, and my gratitude for all his work and efforts. Again thank you and all the other people who work with this organization to help those of us with this disease.
Anne Duncan
I am extremely sorry to hear this. I would pray for his departed soul and may god give his family and friends to bear this tragic moment. I recently lost my father in law to Aplastic Anemia. I really appreciate your help and support that your emails n letters had provided during our tough times. Thanks.
Regards,
Charu
Thank you for notifying me of this very sad news. Mom had just told me he was ill ~ just this past Saturday. I am shocked to hear of his death. I will always remember his smile and his kindness. He was a great man.
Margie
Thanks for the information. I have heard lots about him and am sorry to hear about his passing.
We are fortunate to have you !!!
Sandy Marron
Just a few hours ago, I was talking to friends about the person I knew of who had MDS and kept going for 14 years. My husband, John, lost his 2 year battle with MDS/CMML on January 11th. John and I both took inspiration from Bob's story which we first heard at an MDS conference 2 years ago. I send my sympathy to the family, and gratitude for the inspiration and encouragement we found in his life.
Eleanor Packard
I am sad today learning of Bob's passing. Your words are such a fitting tribute to a great man. Thank you. It really does seem his life was cut short.
God bless,
Mike
Please give my sincere sympathies to his family - and my best to you and your colleagues at this difficult time. Working in a hospital as I do, I come in contact with so many who are either suffering themselves or who have serious illness in their families. Death is an enemy no matter when it occurs.
Yvonne Sargent
Library Assistant
Health Sciences Library Kaiser Permanente Medical Center
What very sad news, the passing of a true icon of courage and good spirits in dealing with all this. I really enjoyed meeting him at the SFO conference and talking with him various times before that on the phone. I have seen him encouraged by a trial and holding on even when it failed, never complaining. Good guy.
Suzy and I will place Bob in our prayers and I have asked to have a Mass said on his behalf. Our parish will send a card about that to Marie c/o you at the Foundation.
Arthur Henry
Thank you for letting us know about the passing of Bob Carroll. This disease seems to strike the most courageous people. My husband passed away last May 22, 2005 from complications of myelodysplasia. He was diagnosed four and half years before. He did the research about the disease and explained it to us, his family what he had, then he decided to live his life as normal as he could. He kept all his blood panel appointments, followed the doctors orders did whatever he needed to do to keep on top of it. He would answer questions if someone asked about it but he did not dwell on it so most of his friends couldn't believe it when he died. No one thought it was that serious. And even though I knew that it was I did not believe that it would take him from me. And if he was angry he never showed it. I just felt that I had to write back to say thank you for all that the foundation has done and will continue to do to find a cure for this disease.
Thank you,
Lil Politis
Thank you and the entire staff for sending out this heartfelt message. I was one of the attendees at the Seattle meeting last month and Bob was as positive as ever. It truly is a loss for all of us, even those of us across the country. But, what an inspiration and wonderful person he was. He will always be in my heart.
With heartfelt sympathy,
Janine
Seattle, WA
I am very sorry to hear of his passing. Not only is it a loss for the AA&MDS Foundation but an even greater loss to the world of a kind and loving person. Please extend my condolences to his family.
Carlos M. DeCastro, M.D.
I'm so sorry to hear of Bob Carroll's passing. I remember attending some of his informal MDS support groups sessions at conferences. Though I did not have MDS I found his support very helpful. He was always optimistic offered valuable information as well. His story was inspiring and hopeful, especially when he mentioned he'd had numerous transfusions for years, always irradiated, and had built up no antibodies. That was reassuring for those considering a bone marrow transplant sometime in the future.
Susan Todd
dx PNH, previously AA
I share deeply in the passing of Robert Carroll. Even though I met him only briefly during the St Louis Seminar in 2001 I felt his presence there was so inspiring. I especially remember him at the silent auction of that event. I have thought of him often along with the treatment processes he endured. He will be looking down on us from the heavens and cheering us on. The working relation that both of you demonstrated at events is a testimony to your shared objectives for AA&MDS. We will look forward to hearing more about Mr. Carroll and tributes.
Blessings,
Ron and Colleen Ewan
I join you in the sorrow of Bob's passing. He was indeed an inspiration and shared his many fine qualities with the many patients and people with whom he had contact.
Despite the disease and the many treatments he endured, Bob lived a full and rewarding life. We were the fortunate beneficiaries of his talents, his positive attitude, and his willingness to share.
Thank you for sharing the information. I wish all of you who worked closely with him, and, of course, Marie, courage and strength to carry on in the days ahead.
Jerry
Boise, ID
This is truly a very sad day. Bob has been here for so many with information and encouragement. I always knew he was working for ways to help all of us.
Connie, diagnosed SAA in Nov. of 2000.
Thank you for this tribute to a wonderful life, well lived. Please give my condolences and thanks to his family.
Sincerely,
Barbara
MDS patient
My heart is full of sadness at the passing of my dear friend Bob Carroll, but just as full of sadness it is, it is also full of thankfulness to have known such a wonderful person.
A quote from Bob Carroll - MDS: A Gift “I often refer to MDS as my gift because it has taught me that relationships with others are what's important in life, nothing else.”
After reading his story, many years ago, entitled MDS: My gift, I told Bob he was “my gift.” He gifted me with friendship, concern and knowledge and mainly hope for the future. Bob was always one of the first people I would go to when a new question arose, for me it was call my doctor and e-mail Bob. He was to many of us a wealth of knowledge and 2nd opinion. Readily available to research, talk, or point you in the right direction.
I shared a little joke I have with Bob. I told him that when we cure ourselves of this dreaded MDS we will drop the S and get our honorary MD. It is that sense of the wealth of knowledge that Bob possessed which he shared with all those around him.
I met Bob through the MDS listserve in April of 1999 when I was first diagnosed. I then met him and his lovely wife, Marie in the summer of 99 at the MDS conference in Chicago. I walked in to the registration area and could spot him immediately. His positive attitude and strength directed me to who he was from the start. Being newly diagnosed, as we are all told in the beginning things looked bleak. It was Bob who gave me hope. I remember calling my husband from Chicago and saying “I met Bob, he's had this disease for 9 years now and he is doing great.” He was my hope and pillar of strength. As he has been for me for the past seven years. I feel today that I have not only lost a friend but a security blanket.
Bob and I would talk about different treatments and options for him and for myself. He knew I have a BMT on hold, hoping for the right timing. He would keep me informed of whatever new progress he heard with regard to treatments and a BMT. He helped me adjust to the dreaded Desferral pump, the expert he was since he had already been using it for several years.
Throughout the years we became co-patients, and friends. I like to think I even played a part in persuading Marie up to give in to a puppy for Bob. A big guy like Bob with a little foo-foo pup. I e-mailed pictures of my then 8 year old snuggled with her puppy and he showed it to Marie, as one of the breaking points. I know even little Nicole will miss him.
Bob's work as an educator, a volunteer at blood drives in his community, a family man, an active member of his church, and a patient advocate and chairman of the AAMDSIF will live on forever. He has touched many hearts and his work will always be remembered.
A quote from Bob Carroll - MDS: My gift “Oh, and I don't plan on going anywhere. I have too much to do and too many mountains to move.”
Bob's positive attitude and love for life kept him and all those around him going. And yes, he had much to do and he DID it and mountains to move and he MOVED them. So rest in peace my dear Bob, I know your legacy and your work will carry on. And when I feel an angel or sense a miracle I will know it is you, in heaven, still moving those mountains.
My love and prayers go out to Marie and Bob's family and friends.
Hugs,
Denise DeSimone Neece
We are heartfelt in our sadness for the passing of Mr. Carroll. And, we are grateful to him and ALL of you for your loving dedication to helping others with bone marrow failure disease.
His life was full and with meaning. We appreciate all he has done. Please feel our respect for this great man and our sympathy to you and his family.
Fred and Jan Reese
It is hard to lose a hero, and Bob was certainly that. I have only a limited view of the many things Bob accomplished as he “beat MDS” for fourteen years, but even what I saw was an heroic contribution for all of us. When we lose such a leader, the best tribute we can offer is to attempt to carry on the work he started, and I know you will be doing that.
Allen Womack
What horrible, and very sad news. I'm still too stunned to write coherently.
Bob was the very heart and soul of AA&MDS, and it is difficult to imagine the organization without its champion. To say his battle with MDS was courageous almost seems belittling. It was symbolic, and inspiring, to all of the patients we've come to admire who have joined us. That he was able to accomplish what he did, not only living, but living well with MDS, is amazing, and what he helped create will continue to inspire generations of patients with bone marrow failure.
I'll write Marie. Please let me know what I can do to help.
Regards,
Mikkael Sekeres, M.D.
I'm so sorry to hear this. Bob was a remarkable man and did great things in his life. I think you are right, that his last meeting was trying to help the Foundation and that is exactly what he did to make his life count.
Sherrie Van Vliet
This is extraordinarily sad news. Bob had more energy than just about anybody I knew…an incredible feat given his illness. His leadership, courage, tenacity will all be missed. I have printed off your e-mail and will write a note to Marie over the weekend. It is only right that she hear from many who have been witness to Bob's kindness and determination.
With warm but sad regards,
Steven Grossman
A little over a year ago my father was diagnosed with MDS. The very first thing I did was to search the internet to gain knowledge about this rare illness. I will never forget that I immediately found an article about Mr. Carroll. Suddenly I felt that all was not hopeless. His wonderfully inspiring life has been my family's inspiration. What a beautiful example to all of us!
There must be thousands of people whose lives were touched by Mr. Carroll's courage, stamina, and absolute refusal to give in to the illness. We are all made better through his noble life.
God bless his dear family. We are much saddened for their loss.
With much sympathy,
Jennifer, David and Heather Crane
Leon and Audry Jones
I am shocked to learn the demise of Robert Carroll. His contributions to the foundation will be remembered ever. We convey our heartfelt condolences to the foundation and to the members of the family of Robert Carroll.
S. Ramachandran Pillai
I am deeply saddened at Robert Carroll's passing. I just met him at the conference at Fred Hutchinson Cancer Research Center. I talked to him at length about his condition and about mine. I am honored to have met him. I'll always remember his story.
David Antillon
Throughout our son Zak's diagnosis with SAA and subsequent BMT and during our membership in the Foundation, it was our pleasure to make Bob's acquaintance at the AAMDS Conferences. I also had the pleasure of serving for a short time on the AA-MDS Board with him. He was a great and inspiring man whom we are all glad to have known, and we all greatly mourn his passing.
Sincerely,
Gary Rossbach and Family
Monument, CO
Even with one flower gone, you are still a field of hope to those who are affected by these serious conditions. May we all leave such a legacy in our own way.
“To laugh often and much
To win the respect of intelligent people and earn the affection of children,
To earn the appreciation of honest critics and endure the betrayal of false friends,
To appreciate beauty,
To fid the best in others,
To leave the world a bit better whether by a healthy child, a garden patch or a redeemed social condition,
To know even one life has breathed easier because you have lived —
This is to have succeeded.”
By Bessie Anderson in Dennis Wholey's Book, Miracle of Change.
Sincerely,
Lou Schwartz
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