The blogger becomes the subject

I don’t like writing about myself, but here’s the MJFF Fox Trial Finder blog about … me.

I used to think that the feeling that I wasn’t doing enough in the fight against Parkinson’s disease was just a neurosis of mine. As the daughter of a person with Parkinson’s, I help my dad with his annual golf tournament. I write for The Michael J. Fox Foundation’s FoxFeed blog, and run our family blog telling the stories of people with Parkinson’s. But I’m always plagued by this feeling that I should be somewhere else, doing more.

It’s a feeling I’ve come to realize isn’t just something I struggle with. Many of my Team Fox brothers and sisters (and my actual sister, Emily), are always willing and ready for the next thing we can do to help. When Fox Trial Finder, the Foundation’s online clinical trials matching tool launched, my entire family signed up. My mother has been enrolled in the Parkinson’s Progression Markers Initiativeclinical study looking for biomarkers for three years. And alerts from Fox Trial Finder would pop up in my email when new trials I was a good fit for were ready for volunteers. But I had a hard time finding something that fit. I would get dissuaded by the length of some trials, since I can’t be sure I’ll be living in this area for 5-7 years.

Then one day, the perfect study for me arrived in my inbox. All I had to do was download a software client on my computer. For 90 days it runs in the background sending data back to the server and it doesn’t interfere with my computer use at all. I wanted to learn more about the idea behind the trial, so I reached out to the coordinator Jan Samzelis of Habit DX to hear her story. My friends and family members who have participated in trials always tell me they get a lot of information during their participation, and yet I was still surprised Jan took the time to personally respond back and forth with me.

She has a background in data security and computers, and last year she met the founder of Gladstone Institutes. Jan told him about their typing cadence measurement and how it could help diagnose and measure the progress of brain diseases. They teamed up, and started looking for possibilities of measuring patients. Jan had submitted the study to Fox Trial Finder so that she could reach the thousands of volunteers who had signed up as interested in participating in PD clinical research. Jan said that using Fox Trial Finder has been a “great way to get measurements [from people with and without Parkinson’s] and possibly in large volumes.”

It’s incredible what technology can help researchers glean from how a person types. “The aim of the trial is prove that our technology can distinguish between Parkinson’s patients and people who do not have PD. We have the first level of proof that it can,” Jan said. “We have also proven that our measure removes age as a variable – thus, we can compare a 20-year-old to a senior citizen.”

My biggest question was about typing speed. I work at a computer all day, every day, so I type faster than many people my age. But Jan said speed isn’t a factor. The key to correlation with disease is inconsistency. “Most of our typing, independent of speed, is on autopilot. When people have a disease of the brain, the autopilot begins to break down and the consistency declines,” she explained. “My holy grail is to be able to [use this technology to] identify people who have a disease up to 15 or 20 years before they show symptoms in the clinic.” That way, says Jan, pharma and researchers can have something to work with for drug development targeting the prevention of symptoms altogether.

I still wish I currently had the ability to do a longer, more invasive clinical trial. I am really interested in those that are seeking children of people with PD. But for now, I am grateful for the ability to take part in one myself.

You may wonder if I still feel like I’m not doing enough. And the answer is, yes. But without Fox Trial Finder and my work with the Foundation, I wouldn’t even have a way to try.