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.