Too Much Activism: When no Good Deed Goes Unpunished
I found out that I carried a gene for ALS/FTD after consulting with a neurologist. When my genetic ALS/FTD journey began in 2018, one of the first things I did was try to enroll in as much longitudinal (observational) research as possible. I believed that the more data researchers had, the closer they’d get to finding a cure. I also learned that scientists generally didn’t share their findings with each other, so it stood to reason that the more research centers I visited, the more biofluids, cognitive test results, MRI images those scientists would use. I also figured that one day, when researchers found a potential treatment or cure for the C9orf72 repeat expansion, they’d know where to find me.
One of the first places I contacted was a research facility at a university in the southern US. Without naming names, let’s just say the PI there was instrumental in finding the treatment for another ALS gene, SOD1. I joined their waitlist in 2021 and checked on my place in line twice a year for five years. To say I was anxious to join a research cohort under this particular PI is an understatement.
In the meantime, between 2020 and March of 2026, I’ve participated in more than 15 other observational studies of FTD and ALS. This means I periodically submit to painful EMG’s and spinal taps, nerve conduction tests, blood tests, IQ tests, strength tests, and the travel required to get to these research facilities. I do it because I’m already at the age of symptom onset. I do it because I have two kids and more than 30 blood relatives who are at risk. I do it because many of my close friends have ALS and will die without a cure.
I’ve also written a book about my ALS/FTD journey. Last Nerve: A Memoir of Illness and the Endurance of Family has been celebrated in the ALS/FTD community because it shines a light on genetic diseases and the challenges that families rise to when they face this kind of adversity. Patients and doctors seem to like what I have to say about patients’ rights, and as a result, I’ve been on tour with this book for almost a year. While I’m honored to be recognized for my advocacy, and while many scientists have acknowledged my service, I’m far from an expert. In fact, when it came to ALS research, I thought I’d seen it all, until the first week of March, 2026, when that research facility in the southern US finally contacted me after five years.
On Monday, I received an email asking me if I was still interested in participating in this study. I responded yes, and I was excited. On Tuesday, they asked me a bunch of questions: did I have my genetic testing results? Did I have a neurologist? A GP? Did I participate in other research? Yes. Yes. Yes. Yes. I sent them my genetic testing results, my doctors’ names, a comprehensive list of all the research I’d participated in. After all, I’ve historically been the poster child for advocacy. For collaboration. A partner for finding the cure.
On Wednesday, I got an email saying that I’d been dropped from the waitlist because I’d participated in too much research. What the fuck?
Apparently, once you’ve taken enough cognitive tests, you can learn how to solve them. This can skew the neuropsychological testing results, making you seem more “able” and others less so.
How disappointed was I to hear this? Let me count the ways. I’d been waiting for five years to be told that it was my turn. Instead of telling me immediately, back in 2020, that I was ineligible, they led me on for this whole time. If participation in other research was an exclusion criterion, it should’ve been listed on their website. If they had asked me when my last neuropsychological test was, rather than just dropping me, they would know that my last test was over a year ago. Also, if I can ace a cognitive test, doesn’t that tell them something? Like I don’t have cognitive decline? Can’t they give me a different test? Like, an AP exam for good students?
This didn’t even scratch the surface of my irritation. What about the hundreds or thousands of other presymptomatic gene carriers who have also enrolled in other studies? Are they getting dropped from research, too? And what about my friends who already have symptoms? Are they getting rejected, like I did? I thought about my symptomatic friends and how they’re living on the ALS clock. Life expectancy for them is two to five years. If they get booted from waitlists, how will they participate in clinical drug trials, once there’s a viable treatment? And if they get pulled from waitlists, what’s the chance they’ll pursue other studies? Is there any hope for genetic carriers? And what’s the point of even being involved if that involvement is taken away so easily?
On Thursday, I wrote a scathing email back to the research facility. I told them that the way they treated me was awful. That I was 56 and not one to wait around to get sick, just because they have a long waitlist. That I couldn’t believe that I was being punished for being an activist. That they should read my book to learn good manners because they obviously didn’t know how to treat patients respectfully.
It worked.
They asked me to meet with them on Friday. The research manager actually wanted to hear me.
On Friday, I met with my fellow genetic carriers (and their families) at an End the Legacy meeting. I told them my story about the facility in the South. They were horrified. I got several frustrated and empathetic texts during that meeting, thanking me for speaking up. Offering support and love. I felt armed with an arsenal of grit, pluck, determination, or whatever you call hope when there is none.
On the Zoom with the research facility that booted me, I was laser-focused. This was not about the fact that I was told “no,” or that my feelings were hurt. It was about the way genetic carriers are treated. We’re referred to as “research participants” rather than by our given names in email salutations. We’re dismissed and often not treated like patients. We’re discarded like lab rats. And sometimes, we’re even called brain-damaged before symptom onset, just because we carry an FTD gene.
I was surprised at how well the meeting went. The research manager agreed that five years is way too long to be strung along. She promised that this would never happen again to anyone else. She reassured me that potential patients would be updated regularly on their waitlist status, and that if they were ineligible, they’d be informed immediately, and not in a form letter. She told me that a new waitlist would be created for patients who have already enrolled in previous neuropsychological research, and that I was at the top of that list. We’d be followed, just like everyone else, but we’d likely be used as healthy controls.
I felt like I was heard, even if she fell short of agreeing to share data with other research centers or administering different tests to people who had already mastered the standard cognitive stuff. But I couldn’t help but think about all of the other people who had been removed from their waitlist already. I’m fortunate because I’m asymptomatic, so I have the luxury of time. Many of my friends are already suffering from ALS and FTD, and their life expectancy is shorter than mine. I’m lucky because, as a vocal medical rights advocate, I already have a platform (the support of End the Legacy, my new book, and my recent activism awards), but other genetic carriers may be too new to this battle to amass an activist’s pedigree.
It’s ironic that when I was told I was “too active” to be eligible in research, my answer was to become louder and be more of an advocate than ever. It would’ve been much easier to just take my soccer ball and go home. Screw them if they don’t want me. I don’t really want another lumbar puncture. Right?
Maybe it’s in my nature to fight back against ALS, FTD and anyone who gets in my way. Maybe it’s because I feel responsible for putting my kids at genetic risk. Whatever the reason, this is in my blood. I will not take “no” for an answer, especially when it comes to a potential solution to something that will likely kill me and my family. I’m in this for the long-run, and I won’t give up until there’s a cure.