Why improving experiences in brain health matters so much to me

Megan’s personal connection to cognitive impairment

For years, business advisors have encouraged us to focus Slide UX on a specific niche — to become the go-to UX agency for a particular industry. We’ve explored areas like insurance, cybersecurity, and fintech. We've worked with clients in each of those spaces, and while they were worthwhile, none of them ever felt like the right fit.

Then, Erin pitched an idea: What if we focused on cognitive impairment? 

The moment she said it, I felt it in my gut — this was it. And I want to share why.

In November 2022 — the week of Thanksgiving — my life changed. I was at home with my husband and two sons, packing for our holiday trip to visit family, when my mom called with news that hit like a tidal wave.

For the past three years, my dad, then 64, had been participating in a clinical study for early-onset Alzheimer’s. Following their most recent visit, a genetic counselor shared unexpected news: my dad has a rare, inherited form of Alzheimer’s Disease.

This not only disqualified him from the study — it also meant that Erin and I, and potentially our children, each have a 50/50 chance of carrying the same genetic mutation.

Many people don’t realize that the majority of Alzheimer’s cases are spontaneous. But in this specific mutation — autosomal dominant Alzheimer's — there is a 99.5% chance of developing the disease if you carry the genetic mutation. And the age of onset typically mirrors that of the affected parent. My dad’s symptoms began around age 57. For others in this community, symptoms appear as early as in their 30s or 40s. Some families have multiple generations carrying the mutation — a devastating inheritance. 

Our dad is the only one in our family we know of that has the genetic mutation. None of his three younger sisters have yet to become symptomatic, nor do any of them intend to find out their genetic status. Neither of his parents had memory issues, though his mother passed away in her early 50s from other unrelated health issues. And while her mother, my great-grandmother, developed dementia much later in life, we don’t know of anyone beyond that. Our dad could very well be patient zero for our family.

Even though our situation wasn’t as drastic as others, in those early days, upon finding out, I was overwhelmed by grief. I had just turned 34. My boys were just 3 years old and 11 months old. I had just become a partner at Slide UX. Life was full, busy, and hopeful. Suddenly, I was staring down a future where I might start losing my memory around retirement age — just as I’d be hitting what should be the peak of my life and career.

I also couldn’t stop thinking about what this meant for my husband — would he become a caregiver in his 50s or 60s? And the same for Brant, my sister’s husband. We’re watching my mom live that role now, and even with my dad’s relatively easygoing nature, it’s consuming — emotionally, physically, and mentally.

Erin decided to take the genetic test right away. She, unfortunately, tested positive for the mutation. This also means her sons, ages 12 and 13, also have a 50% chance of carrying the mutation.

I’ve chosen not to get tested yet. Initially, I waited to set up long-term care insurance — which, let me tell you, is a strange and sobering task at 34. Most companies won’t even quote people under 40. But this is the reality we’re facing.

Now, I’m holding off testing to participate in a clinical trial alongside Erin. The study needs participants who know their status and those who don’t. The first couple of years will be double-blind, meaning the doctors and patients won’t know who receives the drugs vs. placebo. Those without the genetic mutation will automatically receive placebo. After the first stage of the trial, I’ll be faced with a decision. I can leave the trial, or I can get genetic testing. If I learn that I do have the genetic mutation, I will either continue to receive or start to receive the trial drug.

I’ll admit, at first I wished we didn’t know. If my dad hadn’t joined that study, we might never have learned about the mutation. We could’ve gone on in blissful ignorance. But now, I consider us incredibly lucky.

We know what we’re facing. We can plan. We can prepare. Perhaps most importantly, I’ve discovered a cause both deeply personal and profoundly motivating. And it’s not just personal to me. Years ago, my business partner Tom’s mom experienced a traumatic brain injury. And Jordan, our other business partner, had a grandmother with dementia. Cognitive impairment in some form has impacted the entire partnership team here at Slide UX, and as I talk to others, I find very few that don’t have a connection to dementia.

Focusing Slide UX on cognitive impairment isn’t just a strategic move — it’s a mission. We’re building expertise in this space because we care about the people affected. We are the people who are affected. We’re learning the nuances of their needs — not just from the outside in, but from the inside out. We want to design products and experiences that support dignity, autonomy, and hope — for individuals with cognitive challenges, for their families, and for the inspiring caregivers who walk this road with them.

This work matters. And it matters to me.