Rare Leader: Catherine Martin, Executive Director of the Huntington’s Disease Youth Organization

March 29, 2018

The Basics
Name: Catherine “Cat” Martin

: Executive Director

Organization:  Huntington’s Disease Youth Organization

Disease focus:  Huntington’s Disease, a fatal, progressive, genetic neurodegenerative condition. A child of a parent with the condition has a 50 percent chance of inheriting the disease.

Headquarters: Bedworth, England

How did you become involved in rare disease:  I am a member of a Huntington’s disease family. I’ve grown up with rare disease. I’ve also had two forms of rare cancers in my family. My grandmother was diagnosed with Huntington’s the year I was born. My mom developed Huntington’s when I was a teenager.

Previous career: Quality Improvement and Project Manager for National Children’s Charity in Scotland.

Education: Dip in Event Management from Glasgow College of Food Technology and FdA in Youth and Community Work. Currently working on earning an MSc at Glasgow Caledonian University in Citizenship and Human Rights.

The Organization
Organization’s mandate: To improve education, support, and services globally for young people impacted by Huntington’s Disease. Until Huntington’s Youth Organization came about, there was very little in the way of services to support young people. There’s been a huge shift in the community to look at supporting and educating young people. We are dealing with young people who are both symptomatic and pre-symptomatic. The majority who are pre-symptomatic are usually caring for another family member.

Organization’s strategy
: There are four overarching themes of our strategy. Education, and making sure it’s age-appropriate and delivered in a manner that young people will engage with it. The second strand is research—not only scientific and clinical research, we do drug therapy, as well as socio-economic research to look at the social impact of rare disease on children and young people when they grow up in families impacted by them. Our frontline services, our third pillar, encompasses on and offline support, and anything that brings young people together, like our youth camps. Our fourth pillar is partnerships. All of what we do, we want to do in partnership with other people, whether it’s industry, other organizations like clinical services, or researchers, to make sure young people are getting supported at all levels.

Funding strategy: We’ll take money from whomever (laughs). We have a mixture of donations from family members and organizations that contribute towards projects. There are some industry and thematic grants we apply for in the countries we work in—some in the U.K., North America, and Australia. New Zealand. We get some philanthropic donations as well.

What’s changing at your organization in the next year: Our biggest change will be our focus on socio-economic research. We’ve been running long enough to have quite a wealth of data. One of the things we’re looking at is how the learnings from that should shape research, which should then shape services for young people going forward—not just in Huntington’s, but in rare diseases in general.

Management Style
Management philosophy: Be honest and actively listen.

Guiding principles for running an effective organization: There’s always a solution. I had a previous manager who every time you said to him, “I have a problem,” he would say, “Go find a solution and come back to me.” And it worked. There’s always a solution.

Best way to keep your organization relevant: Continuous consultation with stakeholders. All of them from the young people we’re here for to the parents, the lead organizations, to industry and philanthropy, you need to keep things relevant. Keep consulting and keep asking the questions and make the decision from the information that you get.

Why people like working for you: Who says they do? (laughs).  The attitude that we’ve got taking on the impossible about every day, but we have this attitude of winning. Everybody who works with me gets to be creative about things and we see how to take on something impossible. Before we set up the organization we were told it was an impossible task. We shouldn’t engage young people and that we would create a huge problem if we talked to young people about Huntington’s. In a short space of time we changed people’s mind on that.


On the Job
What inspires you: The young people and families I meet every single day and hearing their stories and their passions. Just hearing their humility is probably their biggest inspiration. I walk away every day and think, “I’m the luckiest person in the world do this job and meet these people.

What makes you hopeful: Science in a lot of ways. The research that’s going on and the advances we are making and just the general hope there will be something and soon for these families. And the families I work with make me hopeful. They face adversity with such dignity and nine out of ten times they have a smile on their face.

Best organization decision: To take the risk and launch. It was the best decision we ever made.

Hardest lesson learned: To walk before you can run. We’re not very good at that. We kind of jump ahead to “Let’s do it.” Learning to take a step back and think about things is always the hardest thing to do, but it’s worth it.

Toughest organization decision: Discontinuing something that’s successful because it’s not financially viable.  It’s always difficult when you have something that’s going well, but it costs so much money that nobody wants to fund it. A project that costs a lot of money for very few people is not something that a lot of funders want to invest in.

Biggest missed opportunity: Waiting too long to develop partnerships. It’s not a missed opportunity, but it was a delayed opportunity and we’re playing catch up.

Like best about the job: Making a difference. That we can see quite clearly where things are working.

Like least about the job: Politics. Can’t stand it. Politics with a small “p.” I not a fan of big politics either, but politics in having to say the right words in the right order to please certain people. It just annoys me.

Pet peeve: Liars. I can’t stand being lied too. It’s a waste of energy to be lied to.

Personal Taste

Most influential book:

Sabre Tooth Tigers & Teddy Bears: The connected baby guide to understanding attachment by Suzanne Zeedyk.

Favorite movie: Depends on my mood by Dirty Dancing, Grease, Breakfast at Tiffany’s, I watch Calamity Jane I can watch anytime

Favorite music: Soft Rock

Favorite food: Eggs. They are so versatile.

Guilty pleasure: Country Music

Favorite way to spend free time: Outside in the fresh air or open water.

March 29, 2018

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