Nonprofit

The heartwarming story behind Grey Matters, North Texas’s only brain tumor support group

“I consider my wife the bravest woman I’ve ever met.”

Grey Matters, brain tumor support group, North Texas, Plano, John Hoffman, Judy Hoffman

John and Judy Hoffman on their 50th anniversary

28 years ago, Judy Hoffman was diagnosed with an unusual brain tumor and was told she only had two weeks to live.

“They eventually told us, your only hope is Portland, Oregon. So, we went to Portland every 28 days for treatments. [We] flew there and back, there and back,” Judy’s husband John told me. “One day they told me that the treatments weren’t working. I said, ‘No. Do something. Do anything. Even if Judy dies, make sure that she doesn’t die in vain.’” The doctors injected Judy’s brain with an experimental drug. It had never been tested in the human brain before, but Judy lived.

Today, Judy is still alive. This is thanks to the experimental drug, and just as importantly, her and her family’s incredible resilience. In 1998, 8 years after Judy’s original diagnosis, she and her husband John Hoffman helped found Grey Matters North Texas Brain Tumor Support Group, a nonprofit that provides support to those enduring similar trials to those Judy underwent years ago. Grey Matters celebrates its 20th anniversary this year.

The Grey Matters support group started off with three couples, including John and Judy, getting together to offer each other’s support. Now, the organization is an official nonprofit with close to 100 active members. They’re also the only brain tumor support group in North Texas. Grey Matters meets on the second Tuesday of every month at Encompass Health Rehabilitation Hospital in Plano, where members share a meal together and exchange stories of hurt, hope, and healing. At Grey Matters meetings, members divide up into two groups: caregivers and survivors. This allows members to speak more freely about their individual struggles.

Grey Matters, brain tumor support group, North Texas, Plano, John Hoffman, Judy Hoffman

The Hoffmans with their granddaughter, Faith Edge

“Sometimes you’ll see someone on the street with a large cut on their head or side… That doesn’t matter to us at Grey Matters. We’ve seen it all. We aren’t bothered by physical injuries. You can feel safe and comfortable [speaking],” John Hoffman told me.

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When I spoke to John and his daughter, Marjorie Edge, I was inspired by the close community that Grey Matters has knitted together, almost like a cozy blanket. Members often go to walks, picnics, and even baseball games together, and they are always willing to be there for each other in times of need. When I asked John if he felt like Grey Matters has expanded his family, he said, “Absolutely. Over the years, the group has had several hundred members. For example, some of those members used to be married to people with brain tumors, and when their spouses die, they keep coming to meetings. Recently, one of these members fell and broke her hip. She may live alone, but people from Grey Matters were there to help her and be with her.” John didn’t tell me this, but he himself actually stayed by the patient’s bedside until 11:00 p.m. the day before we talked. I heard about this through Marjorie. “He stayed by her bed, almost until midnight. Who does that?” she said with a warm laugh. “That’s why I’m so proud of my parents.”

Grey Matters, brain tumor support group, North Texas, Plano, John Hoffman, Judy Hoffman

The Hoffmans with their two daughters, Suzanne Smith (left) and Marjorie Edge (right)

All those years ago, when Judy was going through treatment after treatment, the Hoffmans refused to give up.

You have a choice of fighting or of acquiescing. My recommendation is to fight.”

“Some people ask me, why don’t you move on with your life?” John said. “And to be honest, I really can’t. It was a blessing that Judy lived. People go through their lives and perceive that they have problems. But if you have your health, you have everything. I want to use our experience to help. If we have just helped one person’s life be easier, I think we’ve fulfilled our life’s purpose.”

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It’s clear to see that Grey Matters has helped not just one, but many, individuals here in North Texas. Emotional healing is just as important as physical healing, and that’s what Grey Matters provides.

All of those people that surround you when you’re in a crisis like that are very, very important,” Marjorie told me. “Everytime I go [to meetings] I’m really humbled and overwhelmed by [the survivors’] strength. They are going through everyone’s worst nightmare, [but] you really don’t have much of a choice except to dig in and to fight.”

When I asked John and Marjorie how the community could support the nonprofit, they both had the same answer: spread awareness about Grey Matters and guide people that are fighting brain tumors to them. Give them a chance to get assistance. On the Grey Matters website, they list all of their meeting dates. If you know someone battling a brain tumor or are yourself fighting a brain tumor, don’t be afraid to reach out and get support.

John also has advice for the general populace: “You have a choice of fighting or of acquiescing. My recommendation is to fight. My wife wanted to live to see her daughters marry and to see her grandchildren. Quite honestly, the treatment my wife endured was very difficult. I consider her the bravest woman I’ve ever met.”

Vaibhavi Hemasundar
Vaibhavi Hemasundar is a high-school junior and aspiring journalist. When she’s not at work as a fulltime student, she enjoys creative writing, basketball, sketching and devouring book after book.

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