Rare Leader: David McIntyre, President, Bethanys Hope Foundation

The Basics
Name:  David McIntyre

Title: President

Organization:  Bethanys Hope Foundation

Disease focus:  Metachromatic Leukodystrophy (MLD) is an inherited, progressive disorder of the central nervous system and the peripheral nervous system. In MLD, fatty substances build up in the white matter part of the brain and spinal cord, affecting mental development and the ability to move in a coordinated way. It usually leads to progressive paralysis, and early death in children.

Headquarters:  London, Ontario, Canada

How did you become involved in rare disease:  Our daughter Bethany was diagnosed with MLD in Toronto, Canada on August 12, 1995.

Previous career:  Police Officer with the Royal Canadian Mounted Police for 35 years. I retired in 2009 after serving in many posts across Canada including a tour with our family in Canada’s Arctic.

Education:  RCMP Police Academy (Regina, Saskatchewan) with related courses at Algonquin College (Ottawa, Ontario) and Fanshawe College (London, Ontario)

The Organization
Organization’s mandate: Our mandate is to advocate for care and to fund research.

Organization’s strategy:  Bethanys Hope Foundation is committed to conducting research into the cause, control, and cure of metachromatic leukodystrophy. We focus on public education and publication about MLD. And we work to give hope to give children and their families who suffer with the devastation of leukodystrophy.
Funding strategy: We raise money through events and social media campaigns. We raised $1 million through a house lottery in 1999 to fund a research lab. The London Home Builders have been at the core of our different events. To date the members and friends of our foundation have raised and provided more than $4 million in support of “Bethanys Hope Leukodystrophy Research Laboratory”

What’s changing at your organization in the next year: We’ve been funding the development of a gene therapy under the direction of Dr. Tony Rupar of Western University – London Health Science Center. The final preclinical work is being completed with a full Clinical Trial Application to Health Canada expected in early 2019.

Management Style: My background is in policing. I had little business experience before our daughter was diagnosed with MLD. We all work hard each day and take advantage of opportunities that come our way. Our big motivator is our work ethic. We’re very hands on with amazing volunteers. People see you working and that motivates them to come out and support the various events we have organized over the years.

Management philosophy: Never give up and treat people with respect.

Guiding principles for running an effective organization:  Respond to all parental medical inquiries as soon as possible. Continually looking for talented members of the community to join our team. As with many similar organizations, volunteers are at the very core of our foundation. Recruiting, engaging, and maintaining volunteers is critical for all our events and programs.

Best way to keep your organization relevant: Our foundation has survived in this very competitive fundraising market by surrounding ourselves with many talented and passionate people. Over the years we have developed a diverse cross-section of the community for our Board of Directors and various project committees. We target the anticipated skill sets required for the future of the foundation and find young members of the community to fill those capacity gaps.

Why people like working for you:  I have a strong work ethic with attention to details. I lead by example and work alongside volunteers no matter the task. We treat all our amazing volunteers with respect at all times.

Mentor: The children and families of leukodystrophy are my mentors.

On the Job
What inspires you: The children who struggle each day for life, with the mothers, fathers, siblings, and extended family members who fight on and on, and never give up on finding dignified care.

What makes you hopeful: Collaboration between like organizations to have a much larger footprint in the fight for awareness for leukodystrophy and funding developments to target diseases with the best potential treatments.

Best organization decision: That came in 1996 to make a commitment to the dean of medicine at the University of Western Ontario that our small foundation would take on the funding of a leukodystrophy research lab if they would be our partners for bricks and mortar. “Bethanys Hope Leukodystrophy Research Laboratory” opened on November 5, 1999 under the direction of Tony Rupar and has operated nonstop for the last 19 years. At that time, we were also collaborating with John Barranger and his lab at the University of Pittsburgh Medical Center.

Hardest lesson learned: Learning it was wrong to assume that corporate Canada would automatically care about your child and our drive for research. As an example, in 1998 we made a presentation for our lottery to a local manufacturer producing cars in our area. An executive in the boardroom that morning asked how many children affected by MLD lived in our area. I explained only one that we were aware of. He said, “That’s unfortunate. If there were only more,” meaning that it was too rare a disease. We have faced that issue many times over the years.

Toughest organization decision: To terminate our 12-year association with the Rock the Park, a week-end music festival in London, Ontario that we started in 2004. Our producer and partners wanted to extend the festival to five days, but that was beyond our volunteer capacity of more than 300 people for three days. We had to add more days to make up for declining revenue because of more competition in the festival production area with greater capacity to hire bigger music headline acts.

Biggest missed opportunity: I cannot think of one at this time.

Like best about the job: Being able to assist leukodystrophy children and their families and to make a difference in their journey.

Like least about the job: Listening to corporate representatives awkwardly explain why they can’t support these children due to the few numbers of cases. “If there were only more,” they say.

Pet peeve:  Having to continually fight for awareness, care and funding for a so-called rare disease

First choice for a new career: Building a home décor business with my very talented wife Lindey. She was well on her way of establishing herself in the decorating design world before our daughter’s diagnosis.

Personal Taste
Most influential book: Love you Forever by Robert Munch

Favorite movie: The Lion King

Favorite music: Country music—Merle Haggard, Johnny Cash, George Jones, Hank Williams, Patsy Cline. Classical music when I’m writing or creating graphics and media.

Favorite food:  My wife Lindey is such an amazing home chef. I cannot pinpoint or select from her binder of favorites. I love anything she prepares with a table full of children and grandchildren.

Guilty pleasure:  Binge watching a documentary series on Netflix, such as Blue Planet or House of Windsor.

Favorite way to spend free time: Travelling, touring, and exploring around North America with Lindey, and watching a baseball game in my woodshop working on a new project with my little Australian shepherd, Audrey, underfoot.

September 6, 2018