Rare Leader: Brad Crittenden, Executive Director, Canadian Association of Pompe

The Basics
Name:   Brad Crittenden

Title: Executive Director

Organization: Canadian Association of Pompe

Disease focus:   Pompe disease is an autosomal recessive metabolic disorder that damages muscle and nerve cells throughout the body. It is caused by an accumulation of glycogen in the lysosome due to deficiency of the lysosomal acid alpha-glucosidase enzyme. It is the only glycogen storage disease with a defect in lysosomal metabolism. The build-up of glycogen causes progressive muscle weakness (myopathy) throughout the body and affects various body tissues, particularly in the heart, skeletal muscles, liver and nervous system.

Headquarters: Penticton, British Columbia, Canada

How did you become involved in rare disease: I was diagnosed with Pompe disease in 2006. I didn’t know much about rare disease before that. I really didn’t sink my teeth into it for a couple years, but I’m not letting go now.

Previous career:  Website design, and prior to that I was a research engineer for a major forest products company.

Education: Studied mechanical engineering at the University of British Columbia and Computer Aided Design/Computer Aided Manufacturing at the British Columbia Institute of Technology

The Organization
Organization’s mandate: Our mission is to help Pompe patients and families through education, support, and community.

Organization’s strategy:  We are a small organization, however, because Pompe is a neuromuscular disorder, our patients also fall under the umbrella of Muscular Dystrophy Canada. This means they receive support from MDC for many of their special needs, like mobility. Our focus is on providing patients with information and helping them connect with other patients and families. We’ve had seven national conferences this decade where families get as much out of the connections they make as they do from the content.

Pompe disease has two periods of onset; infantile and adult. Infantile Pompe disease makes up about 20 percent of the patient population. We know we don’t have the numbers to provide them with as much focus as we do for adults, so we have a program to help infantile patient families attend the infantile Pompe conference at Duke University. This year MDC was able to help with some of the cost, which illustrates how important it is to build relationships with other organizations. I’m a big believer in building those relationships. We’re all in this big ball o’ fun together.

Funding strategy:  Since we are a nonprofit society, not a charity, our fundraising opportunities are limited. We rely on industry support for many of our program. We expect that to evolve into other funding models over the next five years.

What’s changing at your organization in the next year: We are transitioning from a nonprofit society to a charity in 2019. We are expanding our use of social media through use of YouTube. With an increasing number of clinical trials, including gene therapy, it’s going to be more important than ever to provide our families with information they need to make informed decisions.

Management Style
Management philosophy: Focus less on speed so as to do a task once. But we need balance. It’s just as important that we accept that people need to make mistakes to be able to learn, grow, and contribute more.

Guiding principles for running an effective organization:  Honesty, respect, compassion

Best way to keep your organization relevant: The best way to stay relevant is through constant connection with patients. Don’t just say the patient is the most important thing, mean it.

Why people like working with you: Sense of humor? Good looks? Stunning personality? Probably not, but I’m a compassionate optimist. I’d love to laugh with you but if you need a good cry, I’m there too.

Mentor: Choosing one person would be unfair to the hundreds of people that have impacted my life.

On the Job
What inspires you: People who overcome situations that would bring most of us to our knees. There are people like that everywhere. We just don’t see them because we’re not looking.

What makes you hopeful: The accelerating speed of change makes me hopeful—personalized medicine, good science, and real success in other areas.

Best organization decision: Not to rely on my memory for anything important. It may sound like I’m joking, but when you’re super busy, you need to use the tools available.

Hardest lesson learned: Learning to say “No,” and learning that I do have to sleep.

Toughest organization decision: Committing to the volume of work that would be needed to move from being a collection of supportive families to a nonprofit society.

Biggest missed opportunity: Deciding not to start my career years ago in IT.

Like best about the job: Building relationships and finding common goals. I’ve met some of the coolest people because I’m rare.

Like least about the job: Travel

Pet peeve: People that miss meetings/calls enough that it becomes expected

First choice for a new career: I’d choose the same career, after we eliminate the need for money in society and we can just go about doing what’s right.

Personal Taste
Most influential book: The Secret by Rhonda Byrne. It’s sitting where I can see it. When I’m not having a good day I just have to look at it and I feel like I’m back in control again.

Favorite movie: So much of what JJ Abrams has done (movies or TV)

Favorite music: Blues, but anything live in a small venue

Favorite food: Sushi

Guilty pleasure: More sushi

Favorite way to spend free time: Coaching my favorite dragon boat team

December 20, 2018