For many years, the holidays were a rough time for Glynis Murray, a longtime friend of the ALS Therapy Development Institute (ALS TDI) who joined our team as a Development Manager in 2021. During her previous career working in retail, it was the most stressful time of her year. Then, in 2016, when she lost her husband Vince to ALS, it became another reminder of what the disease had taken from her. The next year, however, she came up with an idea to bring joy back to the season – with the help of the ALS community she had become so deeply involved in.
“In 2016, I had absolutely no Christmas,” she remembers. “No one was allowed to have Christmas around me, no presents, nothing. So, I started an ornament exchange in 2017 to try to get back the Christmas spirit. I thought, ‘let's start with the ALS community and kind of go from there.’ It was a therapeutic thing for me to do and something fun for our community.”
The idea was simple: gather people who want to participate in the exchange. Assign everyone a person to send a Christmas ornament. Every participant gets a new ornament for their tree, and, more importantly, makes a new connection with someone who understands what they’re going through. Glynis created a group on Facebook and invited her friends and connections from the community.
“My concept was: you send one person an ornament and somebody else sends one to you,” she says. “So, you get two new people in your life. It was to show everyone that even though ALS can make you feel very alone, you're not alone in this world.”
That first year, 39 people signed up – a number Glynis felt was a big success. She decided that she would make it a yearly tradition. As word spread through the community, and people convinced their friends and family to join, the number of participants hit more than 200. For years she handled everything herself ¬– assigning exchange partners, keeping track of who had sent and received their ornaments, and maintain the Facebook group. Finally, in 2022, Glynis enlisted three other volunteers to help keep everything organized.
Glynis asks everyone who participates to send a picture of the ornament they receive to the Facebook group. This is both to keep track of who has – and who hasn’t – completed the exchange and to let everyone see what ornaments are being shared. She says there are many classic, traditional ornaments sent in the group, but her favorites are when people get especially creative.
“I try to give everyone a little bit of information about the person they’re assigned to give them some ideas,” she says. “For instance, one person in the group, Katie Bauer, lost her husband to ALS. She used to call him her Superman. Then, someone sent her a Superman ornament. This year, someone sent Val Tassinari, who’s a scientist at ALS TDI, an ornament with a picture of a zebrafish, like the ones she works with in the lab. The whole point also is that this is not anonymous. This is a way to have two new friends in the community.”
Anyone can participate in Glynis’ ALS Ornament Exchange simply by joining the Facebook group and filling out a form with their name, address, and a little bit of background information. Sign-ups usually begin in October, and participants receive their assignments in November. While this year’s exchange is already well underway, Glynis says it will be back again in 2023 to brighten up the holidays once again in some small way for people in the ALS community.
“I think sometimes the holidays are kind of the crappiest times of the year for people in this community,” she says. “I really want them to feel supported. I think even if it's just a silly little ornament that comes in the mail or picking out one that you're going to send out to someone else, it just makes you feel a little bit like the Christmas spirit is alive and well. And that’s what I want people to get out of it.
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