Robert K. Massie Jr.

Rest in Peace, First Lady

Laurie Kelley February 2, 2025

Suzanne Massie, who died a week ago at age 94, will always be our First Lady of hemophilia. Her passing is a significant, inevitable, yet still sorrowful. There’s hole in the world, in our community, where she once was. I fear though, that newer members of our community will not have heard of her, or the important impact she had. I want to ensure she is honored, as she should be. Besides Queen Victoria, who else could be our first lady, the first important mother of a child with hemophilia?

I first talked to Suzanne in May 1992, who was bursting with ideas for the two of us, including getting an official invitation to Russia for me. Hemophilia? Russia? How did all this come about?

It seemed predestined. On Christmas Day, 1986, my mother casually handed me a present she forgot to wrap: Peter the Great, by Pulitzer Prize winner Robert K. Massie. “His son has hemophilia; that’s why he writes about Russian history.” Massie had already published Nicolas and Alexandra, about the last Tsar of Russia whose son had hemophilia. I devoured the book, and Massie became my favorite author. Neither my mother nor I knew at the time I was newly pregnant; nine months later I delivered a beautiful baby—you guessed it, who had hemophilia. Even more weird, knowing it would be a long labor, I brought along my copy of Peter the Great to re-read, complete with yellow highlighter. The nurses teased me: What did I have, an exam the next day?

The next month, at our first clinic meeting, our nurse, Jocelyn, suggest I might like to read Journey, by Robert K. and Suzanne Massie. She asked if I knew Bob Massie, and I said yes, Peter the Great was my favorite book. And she said no, I meant the son, Bob. Of course I had never met him. It turned out he lived two miles from my house.

I then read Journey, which I believe is the first real book about hemophilia. It chronicled their life, and the birth of their son Bob who was born in 1958. I was in tears by page 11 and couldn’t read any further. Then unbelievably, Bob actually called me one frigid night in January 1988. He was the first person with him hemophilia I ever talked to in my life. He was so kind, so relaxed, and completely put my mind at ease. I was a new mom, with a lot of stress and debt, and a new baby with this obscure disorder. Bob, it would turn out, was just as amazing and kind as his mother.

Eventually I was able to meet his mother. I think I offered to use my database for my newsletter PEN to reach out to families with hemophilia to collect clothing and toys for Christmas for children in Saint Petersburg, Russia. Even I didn’t know the extent to which Suzanne Massie was so important. With the couple’s focus on Russian history, and Suzanne’s involvement in Russia, she actually became President Ronald Reagan’s adviser on Russia. You may have heard the phrase “Trust but verify.” This comes from a famous Russian phrase Doveryai, no proveryai. Suzanne offered the phrase to Reagan when dealing with Russians. Reagan like the phrase so much, it became a White House policy. 

Our efforts worked: we received 800 lbs of clothing and toys for the kids in Saint Petersburg, All gifts from the US hemophilia community. I remember Suzanne visited me at the warehouse, where the boxes ended up, and turned and looked at me, still a young mom, and said “Look how much power you have.” I believe she felt proud of me. And Suzanne, who was 61 at the time, and I spent about four hours in that very cold U-Haul warehouse sorting and packaging up clothing and toys. I marveled at her drive, energy, and stamina. Yes, she became my hero.

Suzanne, surrounded by the St. Petersburg, Russia, children who received the gifts we collected

We spent more time together. In March 1993 I went to Suzanne’s house in Boston for our interview for my newsletter PEN. I recall how deeply she expressed love for the children. with hemophilia in Russia–who at that time had no access to factor.

In May 1993, I visited at her house again and we watched a 70-minute Russian documentary of her life. The Russians loved her. She had founded a nonprofit called the Firebird Foundation, which helped children with hemophilia in the Saint Petersburg area.

I also got to know Bob better, especially in September 1993, when we hosted him and his wife for dinner at our small home in Medford, as he discussed plans to run for Lt. Governor of Massachusetts. This family was amazing!

In 1997, I visited Russia for the first time, and in Saint Petersburg, I was able to meet Elyena, the nurse in whom Suzanne had entrusted the Firebird Foundation. Suzanne later asked me about the trip and asked, didn’t you feel like home when you arrived in Russia? Her love for that country was immeasurable.

Time went by, and with three children I was very busy. By then I had my business, and also had started Save One Life, a nonprofit dedicated to children with hemophilia in developing countries. We had a major fundraiser approaching in 2012, and it was my chance to dedicate the gala to Suzanne. We would honor her for her work for children in Russia and for being such an inspiration to all of us. I decided first to visit her in Maine where she lived now. It was a four and a half hour ride each way, in one day. But it was so well worth it. Suzanne was of course older, slowed down a bit, caring for her husband, but was in the process of writing a book about her years with Reagan. Of course she was!

Bob and his family, and also Bob’s sister Susanna, who I had met quite a few years before, and who has two sons with hemophilia, and all their children arrived for the gala held in Massachusetts. It was a wonderful event with a huge turnout. Suzanne is a great speaker, so knowledgeable, and yet connects with everybody. At the end of the event both she and her son Bob signed their books (Bob had a newly published book, A Song in the Night). And still, I felt that I could never do enough to praise this amazing woman who made such an impression on me, and gave me the confidence to continue my work, especially internationally. I could never fill her boots or take her place, but she was a constant inspiration in my life to help me fulfill my mission.

I read online that in 2021 she was awarded Russian citizenship. What a fitting tribute to such a dedicated woman. I will never forget her, and I have all her books in my library. I hope this generation of mothers can look to her for inspiration as well. Read her books; learn about her life. She’s living proof that one person can impact a global community.

  • Massie, Suzanne, Trust but Verify: Reagan, Russia and Me, Maine Authors Publishing, 2013: Paperback and Hardcover.
  • Massie, Suzanne, Land of the Firebird: The Beauty of Old Russia, Simon & Schuster 1980: Paperback; Touchstone 1982.
  • Massie, Suzanne, Pavlovsk: The Life of a Russian Palace, Little Brown & Co. 1990: Paperback; HeartTree Press 1999.
  • Massie, Suzanne, The Living Mirror, Doubleday & Co. Garden City New York 1972: Paperback: Anchor 1972.
  • Massie, Suzanne & Robert Massie, Journey, Alfred A. Knopf, New York 1975: Paperback: Warner’s 1976; Ballantine Books 1984.

Memorial Day with a Memoir

Laurie Kelley May 28, 2012

I often think of Memorial Day as a time not only to think of those who died serving our country, but of those veterans from the hemophilia community, who died from HIV, or who are still fighting the good fight, so that our sons could live. Their infections and/or deaths expedited the call to identify the virus that stalked the blood supply, and to find treatment fast.

Bob Massie is one of those. And he’s written about his experiences in a new autobiography called A Song in the Night: A Memoir of Resilience (Doubleday, 287 pages, $24). I urge you to buy it and read it. It’s the newest book in the hemophilia marketplace, and it is a gem.

You may know of Bob from one of several places; he’s a rolling stone, despite his health issues. Episcopal priest, author, researcher, politician, human-rights activist, father of three, nonprofit leader. You may recognize him as one of the people profiled in 2010’s documentary Bad Blood. You also may have met him first like I did, through his parents’ book Journey, from 1973. Journey was truly the first book about hemophilia, told in alternating chapters from the parents, Pulitzer-Prize winner Robert K. Massie and then-wife Suzanne Massie. This stunning book put hemophilia on the map, and revealed painstakingly what it was like in the 1960s and 70s to raise a child with this rare genetic blood disorder.

Bob now shares his own perspective on his life and also continues where Journey left off. Without a shred of self-pity, he shares the searing pain that left him crippled as a child; the loneliness of being left behind and unable to participate in school or playground activities like the other boys. Not surprisingly, but admirably, he turned his suffering into something greater, something that would eventually benefit many. Bob became a crusader against social injustice in its many forms (his influences reached South Africa at one time) and despite his physical limitations, he achieved more than an average person would, without any limitations. His list of accomplishments is stunning, leaving the reader feeling a bit inadequate: if a person who spent years ill in bed could do all this, what’s our excuse?

Bob has excelled in many areas and following a successful lived transplant two years ago, is going stronger than ever as president of a nonprofit, following a year of campaigning for US Senate. Despite spending years in a drug-induced wait for a new liver, watching life pass him by, he is back, strong and focused, and continuing still to make a difference. A Song in the Night is less a memoir of what life did to him, but rather how he has made a life despite so many hardships and setbacks. Bob references his faith often, which has been unshakable and contributed to his desire to overcome his illnesses and in turn, help others.

Like our war veterans, Bob Massie has served on the front lines, earned his battle scars, works to make the world safer and better, and above all, is inspiring. He inspires us, I think, to see the challenges we face, however hard, as perhaps a calling from Above, a way to persevere and then to serve our fellow humans, with love. In one passage of the book, Bob describes his ordination as a deacon. The bishop looked him straight in the eye and told him his responsibility, his mission, was “to serve all people, particularly the
poor, the weak, the sick, and the lonely.” Bob has accomplished all this, and more.

This is a well-written book, full of history, personal narrative and profound inspiration. We should be proud of Bob Massie in our hemophilia community; he has overcome, with his unconquerable soul.

Putting One of Our Own in the Senate

Laurie Kelley January 16, 2011


There was a welcome article when I picked up the Boston Globe this morning: “REMEMBER BOB Massie? The 1994 candidate for lieutenant governor doesn’t think so, and he’d like to reintroduce himself. “I’ve been away a long time,’’ he said in an interview.”

Of course we remember him. Son of Pulitzer Prize winning author Robert K. Massie, and author Suzanne Massie, who served as one of Ronald Regan’s advisors on Russia. They are most famous for the book Nicolas and Alexandra, the last Tsar and Tsaress of Russia who had a son with hemophilia. High powered parents, and an extraordinary childhood, all chronicled in the parents’ deeply stirring book Journey, arguably the first book ever on hemophilia. Many of us know Bob, and many of us just saw him at NHF in New Orleans. Yes, he has been away, with good reason. He no longer has hemophilia, thanks to a liver transplant in July 2009.

Bob has been through a lot. I saw him last January, when he donated all of his remaining factor to Project SHARE; with a new liver, he no longer has hemophilia and doesn’t need factor anymore. I visited him in his Cambridge home and got to meet one of his sons. I noticed all the photos of Bob with politicians: Bill and HIllary, Al Gore, and Ted Kennedy. His family has close political ties with many of our country’s top figures. And when we saw him in New Orleans in November, his transformation was remarkable. He looks fabulous, and obviously feels great. He is now a contender to unseat Republican Scott Brown in the Massachusetts Senatorial race in 2012.

Bob’s the first Democrat to publicly declare his candidacy. The Globe article notes: “Massie is certainly an unusual candidate. An ordained Episcopal priest with a PhD from Harvard Business School, he
is an award-winning author and social entrepreneur who also happens to be one of the longest-surviving HIV
patients on the planet.

“Is he a strong candidate? His ability to raise money and build an organization will tell…. he also knows he needs to get an early start on 2012, and is performing the necessary obeisance to political figures around the state. He formed a campaign committee, is establishing a depository account, and will have a website up shortly.”

For us, the hemophilia community, Bob could be a true godsend for health care reform. The Globe reports, “He believes
the American medical system (at least until the recent reforms) is a disgrace: tending to deny care to those who
need it most. ‘In addition to the burden of illness, people are being punished — there’s no other word for it — with
bankruptcy, misery, poverty,’ he said. ‘In my view that’s un-American.’

“…Massie has also deeply studied the health care system, its economics and history, from the inside out. At age 12 his family spent a year in France, where all his hemophilia drugs and treatments were covered ‘as a fundamental right of citizenship.’ Health care policy is not theoretical with him. Besides, Massie is no anti-business scold. He has worked with many of the world’s largest companies, including Sunoco and Ford, to develop the first standardized measures of corporate social responsibility.”

It will be interesting to see if Massachusetts, which stunned the nation when Scott Brown was elected, is ready to re-evaluate. Long considered a liberal state, and fertile ground for Democrat hopefuls, Brown overturned all the tables. Bob could represent a return to the roots of liberalism in Massachusetts. His candidacy can perhaps be a litmus test to see how Massachusetts is transforming. Was Brown a blip? We will wait and see. The idea of having someone who has suffered from hemophilia and hepatitis most of his life at Capital Hill could only be great for the hemophilia community, and perhaps for all who suffer from chronic disorders.

From “The timely return of Bob Massie”
By Renee Loth
January 16, 2011
Renee Loth’s column appears regularly in the Globe.
© Copyright 2011 Globe Newspaper Company.

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