Rare Leader: Kelly Trout, Co-founder, International WAGR Syndrome Association

The Basics
Name: Kelly Trout

Title: Co-founder, chair of the board of directors, and director of research and medical advocacy

Organization: International WAGR Syndrome Association

Social Media Links:

Disease focus:  WAGR syndrome is an ultra-rare genetic condition. “WAGR” is an acronym for the most common features of the disorder:

• Wilms’ Tumor, a type of kidney cancer in children
• Aniridia, absence of the iris (the colored part of the eye)
• Genitourinary abnormalities
• Range of developmental delays

A variety of associated conditions including chronic kidney failure, obesity, seizure disorders and others are also possible, making WAGR syndrome a complex challenge for patients, families, and physicians.

Headquarters: Laytonsville, Maryland

How did you become involved in rare disease: My daughter was born with WAGR syndrome. When she was 17 years old, I finally found a couple of families with children who had the same disorder. While some of us focused on supporting each other and finding new families, my focus became finding and sharing medical information to help improve diagnosis and treatment. Our organization took off from there.

Previous career: I was a registered nurse primarily working in labor and delivery.

Education: B.S. in nursing from Murray State University in Murray, Kentucky

The Organization
Organization’s mission: Our mission is to promote awareness, stimulate research, and support families affected by WAGR syndrome. We’re a small organization. Our executive director is our only paid position. Everything else we do is accomplished by volunteers.

Organization’s strategy: Our strategy is to stay true to and focused on our mission. That’s the template for everything we do. There are always decisions to make about how to spend our time and resources. By always focusing back on our mission, we can make intentional choices.

Funding strategy: We’re currently developing a formal strategic fundraising plan. When we started out as a kitchen table support group almost 20 years ago, our fundraising was random; individual donations and families holding fundraising events. After becoming a nonprofit, we began to have some success getting sponsorships and grants. More recently we’ve been partnering with a number of family foundations, and that has been very productive. But as the organization matures, we know we need to create a more complete and deliberate strategy for the future. In addition to the things that have worked for us in the past, our plan will include grant writing, partnerships with pharmaceutical companies, and establishing an endowment fund.

What’s changing at your organization in the next year: We’re dramatically increasing our efforts to stimulate research on Wilms tumor and Aniridia, we’re building on our collaborations with other organizations, and we’re expanding our base of volunteers and leaders. We have our first mouse model project for Wilms tumor set to start this fall, and several of us are traveling to Europe this summer to help facilitate efforts by Wilms tumor researchers there. We’re working on creating a Clinical Center of Excellence for WAGR syndrome at the new Rare Disease Institute at Children’s National Medical Center in Washington, D.C.  And planning is already underway for our next “WAGR Weekend,” (family gathering) which will be held in Philadelphia in 2020.

Management Style
Management philosophy:  When we were a young organization, we looked at what positions were needed by the organization, and simply tried to fill those roles. I think this is typical of small nonprofits, but it can be a recipe for frustration and burnout. My approach now is to ask people about their passion. It’s a great way to discover what role will allow that person to feel motivated and fulfilled, which actually makes them much more effective as well.

Guiding principles for running an effective organization: My guiding principles are the three Cs: communication, conflict resolution, and collaboration. Keeping everybody in the loop is a challenge when you’ve got a lot going on, but it’s so important. Conflict resolution is a big one for us, because we’re a virtual organization and it’s easy for misunderstandings to happen. When they do, it throws a wrench into everyone’s time and efforts. So having a formal conflict resolution policy provides a framework to minimize the number of issues, and a positive way to resolve them.  Collaboration is a big buzzword these days, but it’s also an extraordinarily creative and productive thing to do. We’re always on the lookout for ways to work together with other groups and organizations maximizes everyone’s effort, to everyone’s benefit.

Best way to keep your organization relevant: As far as our own patient community, early on, we made a lot of assumptions about what was important to our members based on our own personal experiences. As parents of children with WAGR syndrome ourselves, sometimes our assumptions were correct, sometimes not. Using Survey Monkey to poll our membership has provided new insights and direction, and now we’re more confident that we’re really meeting the needs of our community. In terms of the rare disease community, attending rare disease conferences and serving on committees and advisory boards are great ways to learn, connect and keep current. I’m an ambassador for the Patient-Centered Outcomes Research Institute, and I serve on the Advisory Board for CoRDS, Coordination of Rare Diseases at Sanford. I’m also on the Global Genes Foundation Alliance Leadership Council.

Why people like working with you: I’ve been told that I’m a patient teacher and a good listener. I really enjoy sharing the lessons I’ve learned, and I strive to be open to different ideas and opinions. I try to admit and learn from my own mistakes. Folks who do these things are the ones I enjoy working with, so they’re things I try to cultivate in myself.

Mentor: Everyone I meet is a mentor. I am constantly reminded that when you listen and engage, everyone can teach you something new and vital.

On the Job
What inspires you: Kids and adults with WAGR syndrome. They have every obstacle you can imagine: physical and mental disabilities, and one medical complication after another. But they just face these challenges one by one, one day at a time, and get on with living their best life.  You can’t beat that as a way to deal with whatever your life—or your work—throws at you.

What makes you hopeful:  Knowledge about genetics is expanding so much faster than it was even just a few years ago, and the pace is increasing every day. Just last month a paper was published on a gene involved with WAGR syndrome and pain perception. This paper is likely to stimulate important research, not just for people with WAGR syndrome, but for the millions of people who deal with pain. New developments like this are incredibly exciting and so very, very hopeful.

Best organization decision: Almost three years ago, our organization was at a crossroads. We were at that stage in the evolution of a nonprofit where you must grow, or you’ll stagnate and die. We made the decision to spend a big chunk of our savings on a leadership retreat. We assembled our most dedicated volunteers, hired a rare disease nonprofit consultant, rented a house in Florida and put all of us in it for a weekend. Together we hashed out a comprehensive strategic plan for the organization. It was absolutely the best thing we’ve ever done. We took off from there, and we haven’t looked back!

Hardest lesson learned: For me, and I think for many of us, there’s never a day when you feel like you’ve done enough. There’s always so much more to do. That feeling is a real recipe for burnout. I’ve learned to accept that whatever I’ve accomplished on a given day is enough. There’s amazing freedom in accepting that, because it allows you to stop beating yourself up and start taking joy in what you have accomplished. That feeling is the opposite of burnout—it’s energizing.

Toughest organization decision: Spending the money to take the organization and our leadership team to the next level. In addition to the Leadership Retreat, we’re also taking a team of six people to the next Global Genes Summit. We’ve learned the importance of investing in both the infrastructure of the organization and in the people who are actually making our mission happen.

Biggest missed opportunity: Not collaborating with related-disorder organizations. Early on, we just focused on doing our own thing. We also tended to see other organizations as competition – for funding, for researchers, for patients and members – and that was so counterproductive. Gradually we realized how much more we could accomplish if we all worked together. Now we’re all about collaborating, and we’re making up for lost time.

Like best about the job: I’m always learning new things. I think this is common in rare disease organizations because we tend to be small, and few of us are nonprofit professionals or experts in doing 99 percent of the things that we do. We have to learn as we go, and that’s exciting and fun. I also love seeing the difference my efforts make for people who have children just like my daughter.

Like least about the job: Always having to invent new wheels. So many of the projects we do are either a first for us or even a first for anyone. We’ll get going on something new and then realize we’re missing a critical piece, so we have to stop and invent that wheel before we can get rolling again.

Pet peeve: Unused turn signals

First choice for a new career: Librarian

Personal Taste
Most influential book: The Lives of a Cell by Lewis Thomas

Favorite movie: Lord of the Rings trilogy

Favorite music: Anything with a cello

Favorite food: Popcorn

Guilty pleasure: Indoor skydiving

Favorite way to spend free time: Hiking