Remembering Marjorie Guthrie (1917-1983)

My grandmother Marjorie passed away on this date in 1983. Although I was only 4 years old, this is the first memory I have in life. I remember the feeling of her apartment without her in it, sitting on her bed and crying. Marjorie was a huge part of my childhood and I have lived my life carrying her with me everywhere I go. When she passed away she gave me a present, an oversized crocheted piece that said, “the best thing you can give your child is your time.” As a mother, I think of that phrase often as the best rule of parenting.

Grammy, I miss you so much and have delighted in learning more about your life, the relationships you had, and the indelible mark you left on so many of us.

If you have a memory or story that you’d like to share, I invite you to here.

HDSA’s 33rd Annual Convention

Hey everyone, Anna here. On June 7-9, 2018, I was invited to be one of the keynote speakers at HDSA’s 33rd Annual Convention. September 18, 2017 marked HDSA’s 50 years of service and they asked me to share the story of how my grandmother, Marjorie Guthrie, started the organization 50 years ago.

This annual conference is focused on educating families who are living with HD, people who are at risk of developing HD, and anyone who wants to learn more about this rare genetic disease. It is organized by the Huntington’s Disease Society of America (originally named CCHD – the Committee to Combat Huntington’s Disease). I was truly transformed by the experience. I met volunteers, doctors, patients, caregivers…all members of the HD family.

 

Here’s a little background…

When my grandfather, Woody Guthrie, first became symptomatic with Huntington’s, my grandmother had to invent caregiving. There were no resources for anyone with this rare disease. To be honest, the doctor’s just didn’t know enough about Huntington’s to be helpful to families. And this is when my grandmother first became active.

Marjorie spoke to Dr. Whittier at Creedmore State Hospital in Queens, NY, where Woody spent the last year of his life. Dr. Whittier said if they just knew more families with HD, they could really make a difference. Most people were either misdiagnosed or they didn’t know they were sick with Huntington’s.

As Marjorie put it, “When Woody became ill I was told that the case was hopeless and helpless. Assuming that was so, I just said, well, I’ve got to live with hopeless and helpless. And if my children have the disease, I’m going to have to live with that too.

But after a long period, in and out of that hospital, I said to myself, “Why is it hopeless and helpless?” And with my kids now being old enough to be able to take care of themselves, I went to Dr. Whittier, who was in charge of Creedmoor Institute, where Woody was at that time, and said, “I want to help”. And he introduced me to some other scientists and they said, “You might be able to help if you could just find families. We believe that this disorder is all over the world, it is hidden, families don’t even know they have it, and those that do are so ashamed they won’t tell anybody because there’s a stigma attached.” With that kind of help, I began to look for families with this disease and then founded the Committee to Combat Huntington’s Disease. We found the disorder was much more prevalent than anybody believed possible.”

In 1966, she put an ad in a NY paper asking for anyone who knew anything about Huntington’s to please call her. One man called, his wife had it. They got together and talked about their experiences. Like how she sewed elastic into Woody’s pants to accommodate his decreasing waist or how she put him in work boots so he could just slip his feet into them and not struggle with laces. The next week, she put another ad in and 2 more people called. They came to her apartment on West 72nd Street, NYC and this was the beginning of CCHD (the Committee to Combat Huntington’s Disease).

Then she traveled around the country and eventually around the world, attending neurological conferences. She would set up a table with information on Huntington’s and she stopped any doctor that walked by. She invited them to her booth and persuaded them to redirect their focus to Huntington’s. She helped create local chapters around the US for families to have access to resources for patient care, education, and be help caregivers so that they could find support in a community of people who were living with this illness.

In 1977, she worked with President Jimmy Carter to create the Presidential Commission for Mental Health and neurological diseases. She believed that the government should help fund research and help Americans suffering from this disease. Basically, my grandmother brought Huntington’s out of the darkness and into the light.

 

Okay, so, back to the present and HDSA’s 33rd Annual Convention…

I was amazed to see the progress in all areas that my grandmother had to “figure out”. There were tables lining the convention hall focused on every aspect of HD. There were tables that had special chairs and beds for patients who are living at home. There were information tables for patient advocacy, support groups for patients, caregivers, and those at risk, HD Trialfinder, Enroll HD, tables for different Centers of Excellence, and so much more. Through my work with Woody Guthrie Publications, I shared an exhibit called “The Note of Hope” with some of Woody’s lyrics and photos.

The weekend was full of and educational presentations during the day and fun, bonding events in the evenings. Some of the symposiums & presentations were on topics like; living with HD, new research and trials for HD therapies, how to manage anxiety, family planning, and what are first symptoms. In the evenings, everyone bonded over the fun events HDSA planned. On the first night, there was an indoor carnival. The second evening had an incredible talent show with performances by the HD Youth Alliance, and the final night was the big gala with an awards program and a very moving candle lighting ceremony.

The highlight of the weekend for me, was the exciting presentation of the very first Huntingtin Lowering Therapy. I invite you to watch the story – HDSA: An Ongoing Story (It begins at 13:30.)

I can’t wait until next year’s convention in Boston!

 

Marjorie organized people to come together and work on so many different aspect of Huntington’s and here they were, each arm of the illness being focused on in its own spotlight. What began as a small grassroots movement was now a huge organization of people, all working together in different ways towards a cure and hope for the future.

I was inspired to join Team Hope Walk which is taking place on Sept. 15th in NYC. We’re “Marjorie’s Changer’s and Hoper’s”. Please consider supporting my team and make a donation, every dollar helps!

To learn more about Huntington’s Disease, please visit www.hdsa.org.

Happy 100th Birthday Marjorie!

October 6, 2017 ~

Marjorie Greenblatt was born in Atlantic City on October 6, 1917. In 1935, after graduating from high school, Marjorie moved to New York City on scholarship and joined the Martha Graham Dance Company. As a core company member for 20 years, Marjorie appeared in such iconic pieces as Primitive Mysteries and Appalachian Spring. Two of Marjorie’s early students were Erick Hawkins and Merce Cunningham.

Marjorie met Woody Guthrie in 1942, when he was a member of the Almanac Singers and together they had four children; Cathy, Arlo, Joady, and Nora.

Marjorie was with Woody throughout his illness with Huntington’s disease and determined to find a cure, she founded the Huntington’s Disease Society of America on September 18, 1967. Marjorie spent 16 years traveling the world talking about Huntington’s, bringing together patients, caretakers, doctors, and politicians. Marjorie was a messenger and activist. She gave a message of hope and strength to a new generation. Her actions changed legislation for the betterment of humankind.

BUT ENOUGH FROM US…LET’S HEAR IT IN WOODY’S OWN WORDS.

In a letter to their unborn child, Woody wrote, “Do you know what a hoper is? Well, that’s what your mama is, a hoper. She has more hopes per square inch than almost anybody else. Hopes about this and hopes about that, hopes about you, about me, about all of the relatives, hopes about lots of people, all people. I ought to say, she’s what’s called a planner. I guess she makes more plans in a day than fascism could tear down in a century. I really believe this was what made me like her…Every detail of her life is not only a plan, but it is a dream, and the whole plan of a better world is one that she dreams about always. And she dreams it so plain and so strong that everybody who gets close to her notices it, and picks it up like a radio taking music out of the air.”

LISTEN to Woody’s love song to Marjorie Guthrie
“She Came Along To Me”, Words by Woody Guthrie, Music by Billy Bragg & Wilco

HAPPY BIRTHDAY MARJORIE!

Irma Bauman

So, I’ll be traveling a little to record oral histories with people who knew my grandmother well.

I had the fortune to recorded Irma Bauman 2 years ago. If you don’t know Irma, her and her husband Mordecai (Mordy) Bauman founded Indian Hill Arts Summer Camp and was one of my grandmother’s very closest friends. She’s now 98 years old and when I told her about this project, she was beyond happy.

As Irma has always said to me, “Anna darling, there is no such thing as “very unique”. You’re either unique or your not, but you can’t be “very unique”. Marjorie, was very unique!”

I look forward to following up with her in the next couple of weeks and seeing what she has to say.

For now, I’ve booked my flights and in the beginning of May, I’m heading to Oklahoma to visit my great-aunt, Mary Jo Edgmon. She is Woody’s baby sister. She knew my grandmother very well and when I asked her if I could speak with her, she said, “Darling, I could spend a week telling you stories about Marjorie. I loved her so.” So, I’m very excited to hear those stories.

While I’m there, I’ll also have the chance to sit down and record Ann Guthrie, Woody’s sister-in-law (Roy’s wife) and her 2 children, Marie & Mary Ann.

Let’s get this ball rolling!

About Me

March 27, 2014 ~

My name is Anna Canoni and my grandmother was Marjorie and this is the beginning of my journey…

My grandmother had many names and was many things to many different people. Perhaps you knew her?

  • Did you know her as Marjorie Greenblatt – daughter of Yiddish poet Aliza Waitzman & Isadore Greenblatt – who was born in Atlantic City and grew up in Philadelphia?
  • Or maybe you knew her as Marjorie Mazia, dancer in the Martha Graham Dance Company and teacher to Merce Cunningham and Erick Hawkins?
  • Perhaps you knew her as Marjorie Guthrie; mother to Arlo, Joady, and Nora?
  • Or did you know her as Woody Guthrie’s wife?
  • Did you know her as a counselor at Raquette Lake Girls Camp or Indian Hill Arts Camp?
  • Do you attend the Marjorie Mazia School of Dance in Sheepshead Bay, Brooklyn?
  • Perhaps you knew her as the woman who co-founded the Woody Guthrie Foundation, supporting the work of like-minded organizations like the Beacon Sloop Club and SingOut Magazine.
  • Perhaps you knew her as the woman who worked and organized neurologists around the globe to come together in the hopes of finding a cure for Huntington’s disease?
  • Did you know of her dream to one day opening an archive of Woody’s materials – to create a place that people would learn from Woody’s life’s work and be inspired to create?

She was many things to many people and this really is the short list.

I endeavor to create a place where I can learn who she was through the stories that are still around. I don’t know what the final outcome will be, but I’m interested in seeing how many of you out there knew about her. So let’s go back in time together and remember Marjorie Guthrie!

Peace and love,
Anna