Stephen VanR. Winthrop

  • Born: August 18, 1958
  • Died: December 24, 2018
  • Location: Wayland, Massachusetts

Concord Funeral Home

Director - Glenn D. Burlamachi, CFSP
74 Belknap St.
Concord, MA 01742
Tel. (978) 369-3388

Tribute & Message From The Family

Chairman of the ALS Association

Stephen VanR. Winthrop age 60 of Wayland, Dec. 24, 2018 from ALS. Husband of M. Jane Williamson. Father of Casey and Hannah Winthrop all of Wayland. Son of the late Nathaniel T. and the late Eleanor R. (Beane) Winthrop. Brother of John (Libby) Winthrop, Serita Winthrop, Nat (Martha)Winthrop, Kate Winthrop, Nina (Jon Gibson)Winthrop and the late Matthew and Beekman Winthrop. Also survived by numerous nieces, nephews, and dozens of cousins.

Family and friends will gather to honor and remember Stephen on Saturday, January 19, 2019 at 2:00 pm in the First Parish in Wayland, 225 Boston Post Rd., Wayland.

Donations in Stephen's name may be made either to the Winthrop Family Scholar Fund in ALS Sciences at Mass General Hospital, 125 Nashua St. Suite 540, Boston, MA 02114 (attn.: Krista McCabe or call 617-726-1392) or to the National ALS Association, at

Boston Globe - January 14, 2019

From the ALS Association:

Stephen's ice Bucket Challenge:


Condolence & Memory Journal


May love and kindness follow yours forever as you do

May your spirit still fill others with your light love intelligence and happiness

May yours always know how loved theirs was and is and find comfort in this

Posted by Zareen Mirza - Cumberland foreside, ME   February 01, 2019

I enjoyed talking with him in NewYork with Howard Phipps. It was nice learning about his sister who was in modern dance in Blue Hill Maine. Maine. Where I had been when we all went to Phillips Academy. Shall miss his intelligent shining face on this beloved earth. Our times together at the unbelievably kind generous Phipps was always fun. To say the least Wishing the very best in all ways to his wonderful family. My condolences will never fill the void. Though I suppose knowing how enjoyed and loved Stephen could be heartwarming. I shall continue to love him and heal from his passing. Best always to his

Posted by Miss Zareen Taj Mirza 11 Spruce Lane - Cumberland Foreside, ME   January 31, 2019


Dear Mrs. Williamson, Casey and Hannah and extended family:
I am so sorry for your loss. I hope you find solace in sharing memories of your time with Stephen to help mend your hearts though I am sure this will take time. Please know that Stephen touched people far and wide.
I can clearly see Stephen (in my mind's eye while sitting in San Francisco) with your whole family in a car traveling to a vacation spot because that is when Stephen first spoke to me and my intern during one of two interviews about how he's living with ALS. I felt like your whole family was part of that interview because all of you so kindly gave us time with Stephen while you were traveling together on a family trip. We interviewed him for a newsletter to help others who are living with ALS. I am reminded of how courageous he lived and am so thankful he was willing to share his story to help others and give us insights on how to live well, despite his diagnosis. I remember him being very innovative and excited about his house modeled to help him live more independently. He shared a few pics of his inventions (sitting stool with nail clippers)-smart man). His story is one of tenacity and courage, and his storytelling has touched many people. I will never forget him. Sincerely, Meghan (

Posted by Meghan Mckenzie - San Carlos, CA - Acquaintance   January 18, 2019

Dear Jane: My heartfelt and deepest condolences. With love, Lorraine Wodiska

Posted by A friend   January 16, 2019

I will remember Stephen through his sister Kate. He was always there for her in the kindest of ways...never to busy to listen and hear. She spoke so kindly of him and his character. His legacy will be himself and the man, husband, father, brother and friend he was. I know she will think of you often and remember your words of wisdom delivered in the gentlest of ways. My heart goes out to your family that was so blessed to have you...even if only for a brief moment in time..the loss will be ongoing thus, the impact of knowing you will carry on indefinitely.

Posted by Janet Harms - Bernardsville, NJ   January 14, 2019

I'm so sorry to learn of Stephen's passing - my wife and I met Stephen and you briefly at a presentation you made on accessible housing (discussing the design of your accessible home) at the Institute for Human Centered Design in Boston. I also have a neuro-muscular disease called Friedreich's Ataxia. You were both so loving and generous with reaching out to all of us who are struggling with disabilities and I took comfort in Stephen's words, "I try to set ALS (substitute many diseases) aside and find joy in every corner of my life whenever I can, he said, though hard as I may try, aspects of my ALS are always there..." I wish you and your family comfort during this difficult time and joy in days to come. Michael Martignetti & Yvette Beeman, Lexington, MA.

Posted by Michael Martignetti Martignetti - Lexington, MA   January 14, 2019

Steve will be sorely missed. He approached life with a spirit that all should emulate. He connected people and worked with purpose. We met as classmates in college and would reconnect at reunions. I am shocked that he is leaving us so soon. My deepest condolences to his extended family.MP

Posted by Michael Picariello - Westtown, PA   January 14, 2019

Stephen, your open heart and courage will forever be remembered and echoed in prayer. It was an honor to have had your confidence and support and I believe you will always be an angel in our architecture.

Posted by Joel Gydosh - Lake Oswego, OR   January 11, 2019

Jane, I thank you for standing by your man' thru this evil disease called ALS. I just lost my sweetheart in October from it down here in NC. We have to keep carrying the torch to find a cure, treatment and method of diagnosis for ALS that has robbed us. I am sorry for you loss and for your children who have lost their father. My daughter is going thru trials at Mass Gen. Keep fighting everyone, keep donating!

Posted by Rogeania McCay - Fuquay Varina, NC   January 10, 2019

Prior to his illness, Stephen was engaged in the political process with an interest in polling and the electoral process. He was a fighter until the end and made the best of a bad situation with his funding and activity in seeking a cure to this destructive disease. I very much appreciated his efforts to stay in touch.

Posted by THOMAS McKean - CONCORD, MA   January 07, 2019

The ALS community has lost a strong advocate in Stephen Winthrop. As a fellow PALS (person living with ALS) as well as a fellow NEALS Research Ambassador, I witnessed first-hand the impact he had on raising awareness of this disease, and advocating for a cure. I had the pleasure of interacting with Stephen and his wife, Jane, at a couple of ALS Symposiums and Walks, and found him to be a sincere and dedicated soldier in this difficult battle to conquer this devastating disease. My sympathies to Jane and their daughters-----he will be sorely missed!

Posted by Marilyn Sanford - Palm Bay, FL - Acquaintance   January 05, 2019

spent quality time with Stephen at the ALS meeting in Houston and his magnificent aide Solomon --

many topics about ALS and how his dealing with this 'stuff' it just glance over and smiled --to me it meant; I am dealing with this --doing the best I can ---and he did till the end

Posted by don casey - El Cajon, CA   January 04, 2019

Stephen launched a program at Harvard to stimulate new research into ALS, and support from that program enabled a very talented junior researcher in my lab to start a new project on the neurophysiology of ALS that otherwise would have been impossible, and which we are continuing. I had the pleasure of meeting Stephen at a symposium on ALS held at Harvard, and he was a warm and funny person. Meeting him was added inspiration to continue working hard towards new treatments for ALS. I also learned from Stephen that Robert Winthrop, who endowed the professorship I currently hold at Harvard Medical School, was not some 19th century historical figure as I had imagined, but actually a modern-day relative. I am very glad to have had the chance to meet Stephen and his support has meant a lot to the work in my lab.

Posted by Bruce Bean - Boston, MA   January 03, 2019


It is with great sadness that I am writing this note. I met Stephen once in a HMS event. He was a brave man who made his illness into a positive force to benefit all. His generous contribution has supported our work on the development of RIPK1 inhibitor for the treatment of ALS. RIPK1 inhibitor has successfully passed on human Phase I trial and advanced into a Phase Ib in ALS and AD patients. Hopefully, Stephen's generosity will benefit all other ALS patients.

Posted by Junying Yuan - Newton, MA - Coworker   January 02, 2019

It is with real sadness that we ntoe the passing of Steven Winthrop. The award he provided helped our work on motor neurons. His brave and tragic fight is an inspriration to us all. Those of us in research do not need a reminder of why we are here. Still, we cannot do it alone and we are keenly aware that the backdrop is so much unnecessary suffering. I will paraphrase Adlai Stevensons comment about Eleanor Roosevelt and change the pronoun for Stephen. "He would rather light a candle than curse the darkness."

Posted by Marc Kirschner    January 02, 2019

Although I never had the privilege of meeting Stephen Winthrop in person, I feel a connection with him and his family. Our daughter and son-in-law bought the Winthrop's home in 2015 and we all remember how gracious the Winthrops were during what had to be a difficult transition for them. I also watched the wonderful YouTube video Stephen made with his family in the back yard of his old home, where his self-deprecatory wit was on full display. Our sincerest condolences.

Terrence and Elizabeth Murphy

Posted by Terrence Murphy - Chestnut Hill, MA - Acquaintance   December 30, 2018

We are so sorry to learn of Stephen's death as he and his family, friends, and medical team searched for a cure that would stop this horrible disease from taking yet another life. Our loving thoughts are with Jane, Casey, Hannah, and Claude, Stephen's father-in-law. Barbara Buell and Paul Langner

Posted by Barbara Buell - Wayland, MA - Friend   December 30, 2018

Family Album

Community Photos

Please accept my sincere condolence. Jehovah God has promised: “He will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.” (Revelation 21:4) While words fail to capture the pain of losing Stephen, we look forward to the time when words will fail to capture the joy of Jehovah God returning him to us.
The ALS community has lost a strong advocate in Stephen Winthrop. As a fellow PALS (person living with ALS) as well as a fellow NEALS Research Ambassador, I witnessed first-hand the impact he had on raising awareness of this disease, and advocating for a cure. I had the pleasure of interacting with Stephen and his wife, Jane, at a couple of ALS Symposiums and Walks, and found him to be a sincere and dedicated soldier in this difficult battle to conquer this devastating disease. My sympathies to Jane and their daughters-----he will be sorely missed!
Rob "Cuac" Macomber - high school classmate of Steve: My most heartfelt sentiments about Steve were expressed in an inscription on the back of the wallhanging in this photo that I gave him at last fall's ALS walk. It said: Steve, It is not at all exaggeration born of the gravity of the situation or sentimental hyperbole brought on by the emotion of the moment when I tell you that I consider your response to a challenge so daunting that it defies adequate description to be the single greatest act of heroism that I have ever personally witnessed. Indeed, the dictionary defines “hero” as: - “a person who has performed a heroic act and is regarded as a model or ideal” - “a person who is admired or idealized for courage, outstanding achievements, or nobility of purpose” The inspirational-beyond-words way in which you have confronted trying conditions that only you fully understand meets all of the above requisite qualities of a hero . . . and then some. And, in so