RARE Daily

Rare Leader: Dean Houle, President of the Board, Moyamoya Foundation

April 2, 2020

The Basics
Name:  Dean Houle

Title:  President of the board

Organization: Moyamoya Foundation

Social Media Links:

Disease focus: Moyamoya is a progressive cerebrovascular disorder caused by blocked or narrowed arteries at the base of the brain. Sm  all blood vessels develop in areas affected to compensate for the blockage and give the appearance of a “puff of smoke” on imaging. This disease causes strokes and TIAs (mini strokes) and primarily affects very young children, but also can occur in adults. There is no cure for this rare disease, however there are surgical procedures that can reduce the risk of strokes and TIAs.

Headquarters: Enfield, Connecticut

How did you become involved in rare disease:  I was first introduced to the rare disease community five years ago when my daughter Samantha was diagnosed with moyamoya disease. She was off at college in her sophomore year studying for her final exams when out of the blue she had a stroke. We didn’t realize what was occurring initially, but, after a period of several days, we learned that she was experiencing a stroke and would eventually be diagnosed with moyamoya. We were fortunate that the major medical center working with the small rural hospital in her college town knew about moyamoya and she was quickly diagnosed. At the time, there was very little information available about this rare disease. She had to have brain surgery after fully recovering from her stroke. Then a couple years later it came back even more prevalently. She again experienced strokes and TIAs and required additional surgeries. Samantha was able to quickly obtain a surgery slot, because another patient’s insurance declined to let them travel for surgery. While she was in the hospital, her cousin Victoria Warren (an event planner) wanted to do something to help us promote awareness of this rare disease that very few had ever heard of. Samantha, my wife Roxanne and I had already been doing some advocating for moyamoya and young stroke awareness for about three years at that point. Victoria created the foundation in 2018. The Moyamoya Foundation Co received 501(c)(3) approval in early 2019. I became the board president in January 2020.

Previous career: Currently work as an IT development manager.

Education: Associates degree in architectural engineering from Hartford State Technical College

The Organization
Organization’s mission
: Our specific objectives and purpose are to support families/patients undergoing moyamoya treatment by providing grants for expenses not covered by insurance, to promote awareness and educate healthcare professionals and the public about moyamoya disease, and to support and encourage moyamoya research.

Organization’s strategy: The foundation is currently a fully volunteer organization and most of the members maintain full-time jobs. The current strategy is to get a solid foundation under the Moyamoya Foundation. I want to make sure we have good policies and procedures in place to ensure we responsibly manage and distribute the monies donated to our cause. Eventually I would like to be able hire a professional nonprofit director to run the day to day operations of the foundation. A professional with rare disease experience could help us grow the foundation into what we envision it could be. Right now, however, the strategy is to get a good solid footing under us. I am working to join a couple of very credible non-profit and rare disease alliances, where we can learn and ensure we are doing things correctly.

Funding strategy: Our funding strategy right now is through voluntary donations. We’re using Facebook’s fundraising capabilities. We have a lot of folks who do birthday and other online fundraisers. We’ve had families direct memorial funds to our foundation in memory of loved ones who have passed away from this disease. We’ve also had people contact us about doing family, small company, and tribute type fundraisers. Additionally, we run our own local awareness and fundraising events.

What’s changing at your organization in the next year: Awareness of our foundation has been growing and we have been achieving our initial goals. We want to extend our awareness efforts and mission beyond the Northeast. We would like to be able to fulfill our mission across the country. We’ve recently begun working with someone in the southern part of the country. Our aspirational goal is that we can establish some regional representation across the country to work with us on supporting our mission.

Management Style
Management philosophy:
I am brand new to the non-profit charitable foundation community. I am able to work with different types of personalities and recognize that I am not the most knowledgeable person in the room. I like to work with everyone at the table, to seek out the best ideas and find the best solutions or outcomes for whatever initiative we are pursuing. I look to bring the right people and resources to the table and to get everyone involved in the discussions. I seek out the right alliances, I do lots of listening, and I like to collaborate to make sure we come away with the best solutions for whatever we’re trying to accomplish.

Guiding principles for running an effective organization: First off, transparency. I also believe an inclusive structure is important, where all members contribute to our success. Lastly, I believe a strong underpinning of good policies and procedures will help ensure the longevity of our foundation.

Best way to keep your organization relevant: We’re working to establish a social media presence. We’re seeking alliances in the rare disease community and will leverage what we learn from other organizations to strengthen ours. We’ve also just established a collaboration with a major Boston Massachusetts hospital as a primary sponsor on a moyamoya symposium and continue to seek out other similar opportunities to raise awareness.

Why do people like working with you: I’m organized and have a calm temperament. Some people say that I’m humble and reserved. I’m patient with people and I like to give people an opportunity to share their ideas. I listen to all thoughts and search out the best solutions. I am not a micromanager. I like to share our successes as a team.

Mentor: No doubt my father. I always try to follow the examples set by my dad. When I’m making tough decisions or doing something challenging, the thought that is always in the back of my head is “how would dad handle this.”  He taught me to listen carefully when people are talking and not jump to conclusions. When negotiating, if everyone walks away a little unhappy, but with an agreement, it was a successful negotiation.

On the Job
What inspires you
: My biggest inspiration associated with the foundation is my daughter. Watching how positive an attitude she’s maintains, even after experiencing the lifelong effects of moyamoya and living with this rare disease, it’s just amazing. Watching her speaking with people in the healthcare community and seeing them intently listening to every word she says when describing her experiences with the disease is inspiring. She is my reason for wanting to ensure this foundation is successful.

What makes you hopeful: I am hopeful because of our accomplishments thus far and knowing we were able to achieve our goal of distributing grants in our first year. Also knowing we superseded our fundraising goals during the first year gives me hope. Lastly, the positive reactions that I get from people with whom I talked about the foundation and why we’re doing it gives me hope for further success. I truly believe we can make a difference for patients, raising awareness, and supporting research for this rare disease.

Best organization decision: My best decision was joining the board of directors of the foundation at the request of the original board. I feel my prior twelve years of experience as a school board member and chairman have helped me to guide our foundation to ensure proper policies and procedures are in place for governing the organization.

Hardest lesson learned: We’ve only been around for a year and a half, and we are still in that learning phase. We’ve gotten some pushback in our moyamoya disease community from folks that we thought would be our allies. It was tough having them question our sincerity to the community and cause. We found it a bit frustrating. The lesson learned is to prove our credibility through our actions and by sharing the impact we make.

Toughest organization decision: The toughest decision was to restructure our board one year in. My niece Victoria, who was the president and founder of the foundation, stepped down and she asked me to join the board. She’s still passionate about the cause and purpose, but she realized she needed to focus her time on running her own business and raising a family and couldn’t also effectively run the foundation.

Biggest missed opportunity: We were approached by someone who wanted to make a large corporate donation to our foundation. Because we’ve only been a 501(c)(3) for one year, the corporation couldn’t make the donation. They require we be a qualified non-profit for a minimum of three years to qualify for the donation.

Like best about the job: What I like best is making a difference, being able to share my experience, and giving back to the moyamoya community. Throughout my adult life, I’ve tried to give back to my community. I was a volunteer fireman for 20 years and emergency medical technician for six of those years. I was elected to the local board of education three times and served for a total of 12 years, two of which I was chairman. Naturally, giving back to the moyamoya rare disease community, which I find myself connected to through my daughter, feels right.

Like least about the job: Volunteering is a double-edged sword. There are not enough hours in the day to get everything done that I desire. I work full-time all day, and then I come home and many evenings I find myself working on foundation tasks until midnight.

Pet peeve: Someone questioning our sincerity to the cause without knowing our background or history.

First choice for a new career: I’d like to be able to advocate full time and impact people’s lives in a positive way. I have met a lot of passionate people in the rare disease community and am inspired by their motivation and commitment.

Personal Taste

Most influential book: I really enjoyed Steve Jobs by Walter Isaacson – Jobs did not let anyone tell him something could not be done and he was a visionary.

Favorite movie: Star Wars—I was there for the opening day of the first showing of the first movie.

Favorite music: Alanis Morrissette, Allison Krauss, Shania Twain, The Cranberries – All great voices!

Favorite food: Pizza

Guilty pleasure: Romantic comedies that I watch with my daughter and my wife.

Favorite way to spend free time: Out and about with our “camping crew” friends. We go out RVing to relax in the wilderness regularly with several couples.





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