RARE Daily

Rare Leader: Keith McArthur, CEO, CureGRIN Foundation

April 16, 2020

The Basics
Name: Keith McArthur

Title: CEO and Head of Science

Organization: CureGRIN Foundation

Social Media Links:

Disease focus: GRIN disorder is a rare genetic condition with severe life-limiting consequences. Many GRIN patients are non-verbal, unable to walk, and many cannot feed or toilet themselves. They often suffer severe and frequent seizures that are not responsive to medical therapies. GRIN disorder is caused by a change in one of seven GRIN genes including GRIN1, GRIN2A, GRIN2B, and GRIN2D. These genes contain the code to create NMDA receptors, which are essential for learning and memory.

Headquarters: Parker, Colorado.  

How did you become involved in rare disease: When our son Bryson was a couple of months old, my wife Laura and I noticed that he started missing milestones. Doctors confirmed that he had a neurological disorder, but it took us nearly a decade to get a diagnosis of a variant in his GRIN1 gene. Two years ago, we held a family meetup in Toronto where researchers gave us hope for a cure. That’s when I decided to set everything else aside and focus on trying to connect with researchers in pursuit of therapies and cures to help Bryson and others living with GRIN disorder. I was thrilled when the CureGRIN board invited me to co-lead the organization along with President Denise Rehner.

Previous career: I worked as a newspaper reporter for a decade, then worked as a social media strategist for a large Canadian company. Now I’m leveraging my journalism experience to tell Bryson’s story. I’ve partnered with the Canadian Broadcasting Corporation on an eight-part podcast series Unlocking Bryson’s Brain.

Education: Bachelor’s in Religious Studies, Queens University in Kingston, Ontario, Master’s in Journalism, Western University.

The Organization
Organization’s mission: CureGRIN is a foundation founded and run by parents who are committed to improving the lives of people living with GRIN disorders. Our goal is to find cures and therapies for people around the world suffering from single-gene disorders related to the GRIN1, GRIN2A, GRIN2B, and GRIN2D genes.

Organization’s strategy: We have a multi-pronged strategy. First, to fund foundational research, which includes animal models, a patient registry, a natural history study, and research to identify biomarkers. Second, to build a global research network made up of patient families, researchers, clinicians and biotech companies. Third, to develop a prioritized list of research goals and questions we need answered. And finally, to strategically invest in research that answers these priority questions.

Funding strategy: We’re a new organization having launched in 2019 and have set a goal of raising $3 million over five years. Our goal for our first year was to raise $250,000 by recruiting 100 GRIN families and providing them the tools to raise $2,500 each from friends and families. We didn’t quite reach our goal but got a huge boost when the Chan Zuckerberg Initiative selected CureGRIN to be part of its Rare As One program. We’ll continue to fundraise and to apply for grants.

What’s changing at your organization in the next year: COVID-19 has changed everything. Donations have slowed down, CZI meetings have been postponed, and labs that aren’t focused on coronavirus research have closed. We’re hoping GRIN animal models will not be among those at risk of getting sacrificed. We’re trying to keep things moving during these difficult times, but recognize we’ll need to shift into overdrive to catch up when the world gets back to normal.

Management Style
Management philosophy: My best bosses have provided me with clear objectives, and a lot of freedom in how I achieve them. I try to emulate this philosophy with people I manage.

Guiding principles for running an effective organization: I’ve worked in organizations where people spend all their time debating tactics. But if you’ve got a clear sense of your organization’s values and goals, the strategy and tactics become pretty simple. Our board spent a lot of time up front on our strategic plan and it’s paying huge dividends.

Best way to keep your organization relevant: We’re a parent-led organization so it’s critical we’re constantly listening to parents to make sure we stay relevant.

Why do people like working with you: I work hard. I’m relentless in my pursuit of a cure. And I treat people with respect.

Mentor: Bo Bigelow of the USP7 Foundation. Not only is he a dedicated rare-disease dad and foundation leader, he also hosts a podcast about his daughter Tess, and is co-founder of DISORDER: The Rare Disease Film Festival.

On the Job
What inspires you: One of the best parts of this job is that I’m constantly inspired by the people around me, the kids with GRIN disorder who battle so hard every day, the parents who fight alongside them, the scientists who dedicate their lives to them, and the rest of the CureGRIN team. And above all else, my son Bryson.

What makes you hopeful: I really believe that we’re at an amazing point in the evolution of life science where dozens of diseases we once thought of as incurable will get cured in the coming years.

Best organization decision: Applying for the Chan Zuckerberg Initiative Rare as One program. We decided to go for it when we were a brand-new organization with a 501c3 number and nothing else. We rushed to build a website, launch social media channels, and build relationships with researchers to give ourselves a fighting chance. We spent countless hours on perfecting our application and it all worked out in the end.

Hardest lesson learned: Fundraising is hard.

Toughest organization decision: I don’t think we’ve had one yet, but could be facing a very tough decision about what to do with our scientific conference scheduled for September 2020, given the uncertainty about COVID-19 and when the world will get back to normal.

Biggest missed opportunity: I wish we’d started CureGRIN back in 2015 when we first got Bryson’s diagnosis.

Like best about the job: This never feels like a job. I’m doing what every rare disease parent would do if they had the opportunity. I’m so lucky to be in this role.

Like least about the job: This work matters so much that it can never be just a job. Success at the job means health for my kid. And when things don’t go right, it hits hard. We’ve had a few deaths recently among individuals with GRIN disorder. And whenever this happens, I feel like I’m letting this patient population down, like if only I worked a little harder, maybe I could keep people alive. But I have to remind myself that this is a marathon not a sprint, and that the hard work of the CureGRIN team and researchers around the world will pay off in time.

Pet peeve: In-fighting between rare disease organizations. Fortunately, we have amazing collaborative relationships with several organizations in the GRIN disorder space.

First choice for a new career: I’m in it right now. I spend 50 percent of my time working for the CureGRIN Foundation and 50 percent of my time writing books and making podcasts. I couldn’t imagine anything better.

Personal Taste
Most influential book: I loved The Gene: An Intimate History by Siddhartha Mukherjee. A fascinating read that helped a guy like me—with no science background—to learn the basics of genetics.

Favorite movie: I’m more of a binge TV person than a movie person. My all-time favorite show is Breaking Bad, but also love Game of Thrones, The Mandalorian, Westworld and Better Call Saul. We’re living in the golden age of television.

Favorite music: Vampire Weekend.

Favorite food: Mexican.

Guilty pleasure: Watching Big Brother.

Favorite way to spend free time: I love to travel with my family and hope that once COVID-19 slows down we’ll be able to do so again.

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