RARE Daily

Rare Leader: Amanda Moore, CEO, Angelman Syndrome Foundation

April 25, 2019

The Basics
Name: Amanda Moore

Title: CEO

Organization: Angelman Syndrome Foundation

Social Media Links:

Disease focus: Angelman syndrome is named after Harry Angelman, an English physician who discovered the syndrome. Angelman syndrome is a rare, neuro-genetic disorder. It occurs in one in 15,000 live births. It is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Characteristics or symptoms of Angelman syndrome include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman syndrome require life-long care. Because of its genetic relationship to autism and other disorders, many researchers believe that curing Angelman syndrome will lead to cures for similar disorders. Angelman syndrome research is on the cusp of potential treatments to reverse the debilitating symptoms of Angelman syndrome.

Headquarters: Aurora, Illinois

How did you become involved in rare disease: It started with my son being diagnosed with Angelman syndrome. I have twin boys, Baden and Jackson, and Jackson was diagnosed with Angelman syndrome two years ago. That’s how I got started in this world. As soon as he was diagnosed, I joined the board of the Angelman Syndrome Foundation and was on the board for a year-and-a-half before I was offered this position.

Previous career: I spent 19 years as a director at the YMCA in Indianapolis, Indiana.   

Education: Bachelor’s degree in psychology from the University of Southern Indiana and a master’s degree in leaderships development for nonprofits St. Mary-of-the-Woods in South Bend, Indiana.

The Organization
Organization’s mission:  To advance awareness and treatment of Angelman’s syndrome through education, research, and support of individuals with Angelman syndrome. Our tagline is “We exists to give them a reason to smile.” One of the characteristics to Angelman’s syndrome is that they are constantly smiling.

Organization’s strategy: Our strategy is to focus on our three pillars of family support, clinics, and research.  All of the decisions made at the foundation focus on those three pillars.

Funding strategy: We have a large funding pool from families. We get a lot of dollars from therapeutics companies that help and support us, that are doing clinical trials, and work toward finding therapeutics and cures. We have a very large walk that we do every year that brings in close to $1.5 million. It happens in 48 states. The strategy is large donors, special events, and grassroots efforts. We have a lot of families that do fundraisers in their cities on behalf of the Angelman’s Syndrome Foundation.

What’s changing at your organization in the next year: The biggest change that we’re going to see with the Angelman’s Syndrome Foundation is that we’re going to be a lot more aggressive with our research, as well as attaching it to the data. We have eight clinics in the United States and four internationally. We’re working on putting a database together that pulls in all of the information on those patients and use that as we move towards more clinical trials from the companies we work with. I think we’re going to see a lot of excitement in the community and some possible therapies that are going to improve the lives of our angels advance.

Management Style
Management philosophy: I try to lead by example. I would never ask someone to do something that I’m not willing to do myself. I encourage and invest in the staff to do the best work they can do.

Guiding principles for running an effective organization: The number one thing for me moving into this role is to make sure you are listening to the families. I need to listen to the needs of our families. Over communicating and making sure our families understand what’s happening at the foundation is going to be important as we move forward. Another thing is developing the staff. The more I can support and lift them up, the better work they are going to do.

Best way to keep your organization relevant: To be transparent with our families and with our partners. Our families want to hear what’s happening from the foundation. They are spending a lot of time raising dollars for us. We need to make sure we are working on behalf of our families and not our own ideas of what we need to be doing. Partnering and collaborating with as many people who have an invested stake in this work is going to be crucial moving forward. That’s one thing that’s going to keep us relevant.

Why people like working with you: I try to be very personal and connect on as many levels with an individual and be as supportive as I can. I know when to be serious, I know when to be supportive, I know when to listen, and I know when to have fun. If you ask someone why they like working with me I think they would say the person you get on a daily basis is always the same person. I try to keep it as real as possible.

Mentor: My mentor was my Jorge Perez, my first boss at the YMCA. He has taught me what it means to be a transformative leader. That’s what I want to be for this organization.

On the Job
What inspires you: What inspires me every single day is my son. I’m in this work because of him and kids like him. When I’m having a rough day, or I am exhausted, or I feel like I can’t handle it any more, what inspires me are these kids and the important role I’ve been given to make a difference in their lives.

What makes you hopeful: What’s making me most hopeful with this work right now is the amazing partners and researchers working hand in hand with the Angelman’s Syndrome Foundation. We’ve been going uphill for a long while and I feel like with are on the cusp of the top of the hill and sail and go quickly down—not in a bad way—but coast because I think there are some exciting things down the path for us and it’s all because of our partners. I’m very hopeful about what the landscape is going to look like for Angelman’s syndrome in the next six months to a year.

Best organization decision: The best decision I’ve made to date is to spend time surveying our families. We haven’t asked our families about how we are doing and what they want to see from our foundation in more than ten years. The landscape of our organization and our disease has changed dramatically over the last ten years. We can’t assume we know what they want. We need to ask. We have to get back to having the families be the core foundation of what we are doing and listening to them.

Hardest lesson learned: Everything seems to move really slow. That’s not a bad thing. As a parent, you want to see fast movement and therapies and research happening fast. Sometime when you move fast, mistakes happen, and things fail. The hardest lesson learned has been to be patient. Sometimes slow and steady wins the race.

Toughest organization decision: Some of the toughest organizations has been having to say “no” to some really good research because we didn’t have the funding. We have only so much money to give to research. We’ve had an extreme amount of highly qualified researchers submit proposals to us that we have not been able to fund.

Biggest missed opportunity: There is some funding we missed out on that could have pushed us forward because we have a small staff and all wear multiple hats. Funding and development has been some of the biggest missed opportunities that we have had.

Like best about the job: The best thing about this job is that I know every day I am making differences in the lives of some amazing individuals. It’s easy to go to work every day knowing that you are making changes that are not only affecting your son, but so many kids and individuals like him.

Like least about the job:  The learning curve—I have a lot to learn in this new role and I want to hit the ground running.

Pet peeve: My pet peeve is technologies that don’t work.  

First choice for a new career: Back-up dancer for Justin Timberlake

Personal Taste
Most influential book: Good to Great: Why some companies make the leap… and others don’t by Jim Collins

Favorite movie:  Any Avengers movie

Favorite music: I’m the oldest living tiny-bopper. I love the Backstreet Boys

Favorite food: Starbucks tea

Guilty pleasure: Spending any time I can in a movie theater with a huge thing of popcorn on my lap

Favorite way to spend free time: Watching Netflix in bed

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