RARE Daily

Rare Leader: Melissa Kennedy, Executive Director, The International Rett Syndrome Foundation

June 18, 2020

The Basics
Name: Melissa Kennedy

Title: Executive director

Organization: The International Rett Syndrome Foundation

Social Media Links:

Disease focus: Rett syndrome is a rare, non-inherited, genetic neurological disorder that affects one in 10,000 females (and even more rare in males). It begins to display itself in missed milestones or regression at six to 18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.

Headquarters: Cincinnati, Ohio

How did you become involved in rare disease: I am trained as a healthcare administrator and I’ve had a career in hospital and healthcare administration. I was having lunch one day with a colleague. I had just stepped away from the job of head of women’s services for a large regional health system. At lunch, the colleague said she had a job opportunity come her way from a recruiter. It’s executive director of the International Rett Syndrome Foundation. She said, “When I saw this position description, I thought this is Melissa.” She gave it to me and I thought, “I’m at a place in my career where I could learn from the various experiences that I’ve had in health systems and in startups, and I can have a positive impact on this organization and what they’re trying to do. I could do good and it would be rewarding.” That’s how I happened upon it. That was two years ago.

Previous career: Healthcare administrator

Education: B.A. chemistry from Lake Forest College; M.H.A, Ohio State University

The Organization
Organization’s mandate: Our mandate is to transform the lives of individuals living with Rett syndrome through education, connectivity, funding transformative research, and, ultimately, finding a cure for Rett syndrome.

Organization’s strategy: We have two concurrent strategies. One is to empower families who are living with Rett syndrome by offering them access to free educational materials and programs, connecting them to a community of families, and a robust clinic network. The second major strategy is to identify and fund groundbreaking research. That runs the gamut from basic, to translational as well as rehabilitative research.

Funding strategy: It’s changing. It’s evolving. Historically, we were entirely dependent upon donor dollars. Over the past two years, that’s changed. We’ve diversified. Right now, I would say we have a donor driven fundraising strategy that is supplemented by income, through venture philanthropy investments, and those two combined pools fund our research. We now fund all of our educational programming through unrestricted educational grants and industry partnerships.

What’s changing at your organization in the next year: We’re expanding our advisers. We’re launching both a scientific advisory board, as well as a medical advisory board. The intention is to allow them to inform our strategic planning process because over the past few years there have been some dramatic advancements on the research landscape. Our community has benefited since 2003 by having an NIH funded natural history study. That funding allowed the clinics to organize themselves around that NIH funding. But that funding is ending so we need to take a look at the next three to five years, reorganize, and tighten our efforts to have maximum impact on both the science front, as well as building out a robust clinical network that’s providing care that is consensus-based and consistent throughout the nation, and prepared to participate in clinical trials. We do have some compounds making their way through to clinical trials right now. We anticipate there will be more. We need to do everything we can make sure that the network of clinics is prepared to participate.

Management Style
Management philosophy: I’m not a micromanager. My philosophy is to set an overarching direction and be clear about the expectations, and then make sure everybody on the team has what they need to get their job done. As much as I focus on organizational success, I focus a lot on professional development of team members because most people that you’re working with are going to move on professionally. I focus a lot on helping people grow professionally and personally. I have found that develops a sense of mutual respect, trust, and loyalty toward the organization. Everybody wins when I do that.

Guiding principles for running an effective organization: I hire people who are much better at their jobs than I would be. I set high, but realistic, goals. The most important thing is to create an environment that fosters collaboration and mutual respect. I had the privilege of working with a faculty member at Ohio State who taught organizational behavior. He and I created a company together and he literally wrote the book, Working It Out: Sanity and Success in the Workplace. I got to study under him and then build a company with him. I learned that I love to help foster high-functioning team development and then watch what that team can do.

Best way to keep your organization relevant: The best way to stay relevant is to listen to the people that you serve. Listen to your customers, make sure you know what they need, and then deliver it. Give them what they need. That is simple, but it is the key to staying relevant.

Why people like working with you: I’ve had the privilege of working with some wonderful people and I get good feedback as a manager. What I hear is that people appreciate that I’m genuine and that I’m focused on what’s best for the organization. And within that framework, I want to help the people I work with be the best they can be.

Mentor: I’ve had two. One person I just mentioned—Steve Strasser at Ohio State. He sadly had significant health issues about 18 years ago and is no longer in a position to help. I would say in the last five years and currently, Bob Graham. He was the past president of the American Academy of Family Physicians. I had the privilege of working with him several years ago for a couple of years. He is a statesman and a leader. He’s a wonderful facilitator. He’s dedicated to building the bench of the next set of healthcare professionals. He’s fantastic and he’s the person that if I have a problem, I think, “What would Bob do?” Or better yet, I email him, or pick up the phone and call him and say, “What do you think?”

On the Job
What inspires you: Having a talented team and seeing an opportunity to change the world. Those two things combined energizes and inspires me.

What makes you hopeful: When I see people being kind.

Best organization decision: Diversifying our revenue sources. Also, we have added some fantastic talent to our team and to our board over the past two years. That has made a tremendous difference.

Hardest lesson learned: There are some leaders who reward politics over performance. That’s hard to watch, but that has helped me become a better leader.

Toughest organization decision: As in any organization, the toughest thing is deciding what you are not going to be. In a small, non-profit foundation there is always more need than there are resources. Saying “we can’t” fulfill a certain need is hard. Most recently we have had discussions about how to expand state-level advocacy work for our families. This work is desperately needed—but it is just not something that we can do right now. 

Biggest missed opportunity: I don’t think we have fully taken advantage of the opportunity to work together across conditions in the rare disease space—finding the common ground that does exist and working together to invest in rising the tide for all of us. I don’t think that I have spent enough time or energy identifying common areas of interest across conditions and putting a lot of energy into leveraging that. 

Like best about the job: I love working with our team and our board of directors. I appreciate that I have the opportunity to improve the quality of life of families living with Rett syndrome. That’s a privilege.

Like least about the job: I don’t like the fact that we are virtual. I only see a small number of staff on a day-to-day basis.  I don’t get a chance to be face to face with the majority of our team and I really miss that. I can’t sit and have a cup of coffee with somebody in the cafeteria.

Pet peeve: I get very frustrated when I see people put personal interests ahead of a team or an organization. I don’t tolerate that very well. That would be one thing that can get on my nerves.

First choice for a new career: Anything outside, like being a park ranger, or something like that.

Personal Taste
Most influential book: Getting to Yes: Negotiating Agreement Without Giving by Roger Fisher, William L. Ury, and Bruce Patton and The Seven Habits of Highly Effective People series by Stephen R. Covey

Favorite movie: The Jason Bourne series

Favorite music
: James Taylor, by far.  However, Spotify has told me what my favorite music is called: Gulf and Western

Favorite food: Anything with cheese

Guilty pleasure: Lately its been red wine and watching The Great British Baking Show

Favorite way to spend free time: The quarantine has given my husband and me bonus time with our two sons. One’s going to be a senior at Loyola University Chicago. The other is going to be a freshman at Wofford College. I’ve loved spending time playing cards and taking walks with them. It’s been a delight.




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