In Letter to My Daughter, Maya Angelou writes: “I can be changed by what happens to me. But I refuse to be reduced by it.”
Less than a year ago, executive director of Guild Hall Andrea Grover — the not-for-profit’s powerhouse leader with a heart the size of her former home state of Texas — was diagnosed with amyotrophic lateral sclerosis, an unforgiving disease that attacks nerve cells in both the spinal cord and brain. It’s been quite a journey for her, her family and her colleagues at Guild Hall (whose praises she can’t and won’t stop singing). From noticing some subtle weakness starting around three years ago to a battery of dogged specialist visits — a baker’s dozen of physicians — it took over a year to get to the ALS diagnosis that would change her life this past January.
But for Grover, who celebrates 10 years at the arts institution’s helm and is this year’s Guild Hall Summer Gala honoree, transparency, continuing her work promoting the arts for all, and mixing in no small amount of pointed humor have been key in dealing with her illness head on.
“You know that saying that when participating in the arts or making art, creative expression adds to quality of life and longevity. I truly believe that creativity is what distinguishes us as a species and enables us to collaborate and cooperate across the whole planet, and it also is part of evolution and innovation,” says Grover. “And you know, creativity is divergent thinking, and you don’t get new answers if you’re using convergent thinking.”
While the disease progresses and physically affects each person differently — so far, Grover’s experience has been sequestered to her right leg — she learned through genetic testing at the Mayo Clinic that her DNA holds the marker for SOD1, a rare genetic mutation that actually holds the first glimmer of treatment hope for the disease in 150 years of research.
“It was like winning the Powerball. I had done all this work preparing to live two to five years, and then suddenly this mutation comes along with a gene-specific treatment that seems to be freezing the disease for many patients, and in some cases people regain some function.”
Through the health advocacy organization GCI Health, Grover started on the drug Tofersen, a treatment for individuals with SOD1 markers that, so far, is showing slow but steady improvement in her mobility and reason for cautious hope. But Grover isn’t the type to sit on the sidelines anyway.
“I have since I was a little kid really gravitated toward creative expression, and to be surrounded by it at Guild Hall in the theater and the museum and the classroom is like, I don’t know, being in in a giant healing machine,” she says. “I can’t say enough about the power of creativity and, finally, science is catching up to it.”
Grover was kind enough to sit down for a candid conversation with Southforker on her disease and diagnosis, the work she’s not done with, and how a little gallows humor goes a long way.
Southforker Heading up an organization like Guild Hall is very demanding and probably doesn’t afford a lot of down time to focus on yourself. In hindsight, was it a slow dawning that something felt wrong, or was there a moment that alerted you?
Andrea Grover It started out the three years ago but it was very subtle weakness of my right leg compared to my left, but it wasn’t alarmingly so at all. On December 13, 2024, I had just gone to my favorite holiday party at my friend Molly Gochman’s in New York. I left the party and I was going to the the apartment where I was staying with a friend. I was going up the steps and I just went down to one knee — very elegantly down to one knee! —but I thought, oh, why didn’t my leg fire? Why didn’t it hold me up? I also had on, I think, four inch heels, and was in head-to-toe sequins and I just thought, oh, I had too much to drink. Then I started realizing that when I was going upstairs over the next month or so, I was really pulling with my right arm.
SF: Were you diagnosed quickly or was it a bit of a road?
AG: The first doctor I went to see was in February 2025, and it was my spinal surgeon, who had done a revision scoliosis surgery for me on the in 2021. I just thought, okay, I have a pinched nerve. He did imaging and a physical exam and he said, ‘It’s not a pinched nerve. The surgery’s perfect. You should see a neurologist,’ and I thought what an arrogant man! It’s definitely the surgery. And so from there, I went to another orthopedic surgeon for another opinion. And then I went to a neurologist, and then another, and another and another. And the very last doctor I saw, which was like number 12, in September of 2025, I asked to refer me to the Mayo Clinic. It was a four month wait for the first appointment. It was just about almost a year to the date, January 23, 2026, when I received an ALS diagnosis.
SF: How has your physical life changed?
AG: Well, my big sister was with me [at the Mayo Clinic], and she’s my warrior. Her name’s Jo Grover, and she’s a therapist and she works in the area of mental grit for athletes and CEOs. She was incredible. She helped me with imagery and breathing, and just finding a way to sleep because, you know, the first couple days you just don’t sleep. I think that’s probably true for anyone who gets a diagnosis that’s considered 100% fatal. It hadn’t sunk in and I was still getting around on these walking sticks. So my brother bought me the Rolls Royce of rollators and sent it to me. I get lots of compliments on it. I actually think I sold one to at least one movie star. I should get a commission!
SF: What coping mechanisms have been working for you?
AG: I have been doing comedy for kicks for a year, almost to let off some steam from my day job. When I came back from the Mayo Clinic, I was working on some material for an open mic. My friends were over and they were sounding boards, and none of it was landing. So I said, how about if I just talk about being diagnosed with ALS? It was really unnerving, but they were in stitches and I kept going. They were very in favor of this [method of the] big reveal, and I thought, all right, here we go because how do you roll out this kind of news? You can either wait until people see you and the 100th person asks you, ‘What did you do to yourself?’ Which is like, please, people ask better questions! So I thought, okay, why don’t I just use my stand-up to own the narrative. I can laugh about it, and therefore people can laugh with me and not feel pity or sadness or aversion or anxiety or whatever it is that people feel around illness. I can make it very natural because, as I say to everybody, we all have a one-way ticket. I just happen to know my stop’s a little sooner than yours. And that has been extremely therapeutic for me.
SF: How did you initially take in the idea to be the honoree this year? Did it feel right to you immediately, or did it take you a beat to say yes, this is an opportunity and not something that I should shy away from?
AG: You know, my first priority is always Guild Hall when it comes to events like the summer gala and the importance of it hitting its fundraising goals. So my first thought was, am I the right honoree? I did ask for a few days to think about it when it was proposed to me by Marty Cohen, who’s the chair of the board, but other board members had lobbied him to make me the honoree. And then I thought, well, there’s an opportunity here. It is my 10 year anniversary, and I do have very good relationships within the community, both patrons and artists. And after a few days I thought, well, gosh, arts leaders rarely get recognized. It’s typically someone else in in the spotlight and a lot of things are changing my life very rapidly. Maybe it would be nice to kind of do a look back, a survey of what I’ve done at Guild Hall over the last decade. I guess maybe like two or three days later, I said, ‘Yeah, I’ll do it.’
SF: In your 10th year as executive director, what’s on your mind?
AG: It has always been important to me as an arts leader that programming is relevant, that it’s not just a form of entertainment but that it connects to something happening nationally in the field or internationally in the world, and that is charting new territory as well. We’ve given a lot of opportunities to artists who are, you know, maybe mid-career, sometimes early career, but taking chances with the art form that they work in, and so it’s a whole team of people that contribute to the programming at Guild Hall, and they are our eyes and ears and all of our senses in the community. I am very proud of the culture of Guild Hall. We had great groundwork set from the very founding because the civic aspect of our mission is very unusual. You don’t find a lot of cultural arts centers that have civic engagement as part of their mission, but Guild Hall has, from the beginning. The founding purpose was to create a finer type of citizenship. So the idea was that we would make a community of better neighbors — people with higher critical thinking skills and who are more compassionate and empathetic to the people around them.
SF: You are planning on working through this for as long as you feel up to it. How does the environment you’re in fuel your mission?
AG: I proselytize all the time about creativity and how good it is for you. And you see it. We have these classes at Guild Hall called Art Social, and they’re exactly what they sound like. It’s two hours with an artist teaching you to do something, and people completely let down their guard, and they connect with complete strangers, and they feel joy and a sense of gratification. Right now, being at Guild Hall is very healing to me. And I have to say, the board of directors, who were already like family, are more so now. Many of them are delivering meals to me. Some of them have even helped to clean my house. I mean, we’ve crossed every professional boundary there is. But you know, it’s very odd — the sickness has been very healing for me.
Guild Hall’s Summer Gala is this Friday, August 7 from 6 to 11 p.m at 158 Main St., East Hampton. Support their mission and get your tickets here.
