Rare Leader: Monica Coenraads, CEO, Rett Syndrome Research Trust

The Basics
Name: Monica Coenraads

Title: CEO

Organization: Rett Syndrome Research Trust

Social Media Links:

Disease focus: Rett Syndrome is a serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk, or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal, and orthopedic issues are common.

Headquarters: Trumbull, Connecticut

How did you become involved in rare disease: I became involved in rare disease through my daughter’s diagnosis in 1998. That’s what started it all, as is often the case for rare disease advocates.

Previous career: I owned a pasta restaurant.

Education: Bachelor’s degree in economics with a minor in chemistry from the University of Connecticut and an MBA in international finance from the University of Connecticut

The Organization
Organization’s mandate: Our mandate is pretty clear. It’s to accelerate a cure for Rett syndrome.

Organization’s strategy: We’re focused on strategies that target the root cause of the disease. Rett syndrome is a monogenic disease. A single gene is involved. It’s not neurodegenerative. Brain cells aren’t dying. We know from animal model experiments that if we can boost levels of the faulty protein, boost them back to normal, healthy levels, the symptoms, at least in animal models, go away. Because of those three facts, we are focused on strategies that boost levels of the protein. So not small molecule approaches, but genetic solutions like gene replacement or RNA editing, DNA editing protein replacement. We have six strategic areas, and our strategy is to launch programs in those areas and once preliminary data is generated, help to transition those to industry programs.

Funding strategy: Funding comes completely from families that have a child with Rett syndrome and their networks. The strategy is to engage with as many families as possible, so that they can partner with us by raising money, which then allows us to do our work.

What’s changing at your organization in the next year: Our hope is that we will see more biopharma companies becoming involved and actually taking on programs that were incubated at RSRT. That’s not a change from last year. It’s a continuation of our strategy.

Management Style
Management philosophy: Surround myself with bright, passionate, and experienced people who know stuff that I don’t know and let them do their thing.

Guiding principles for running an effective organization: Always keep the goals of the organization front and center to try not to have mission drift. Act in a responsible and ethical way.

Best way to keep your organization relevant: Deliver on our goals. We set out to get industry involved and to have industry programs that are all attacking the root cause of the disease. Three years ago, there were zero companies and now there are six. That shows that our business model works, and we need to keep it going. The more shots on goal the better. I can’t imagine anything more relevant than trying to cure this disease, which is pretty brutal.

Why people like working with you: What you see is what you get. I’m a doer and a networker.  I’m fairly easy to work with. I try to be open-minded. I am pretty humble about what I don’t know because what I don’t know is enormous. I try to learn something new every day. I’m open to people’s ideas. And this is very personal for me. I have a daughter who suffers greatly every day. There’s no drama or ego involved. I’m just trying to get to a cure for my daughter and hundreds of thousands of other individuals like her as fast as we can. That’s the only objective.

Mentor: I have a lot of mentors. I have scientists who have been my mentors for two decades, who have taught me a tremendous amount. I have leaders from other nonprofits who have been my mentors, who taught me about the nonprofit world. They allowed me to not have to start from scratch and to learn from their experiences. I have mentors who are parents of Rett children who are older than mine. Knowing that they’ve made it through each day has helped me get through each day. I’ve been lucky to have many mentors.

On the Job
What inspires you: My daughter, 100 percent, and other individuals with Rett.

What makes you hopeful: What makes me hopeful is the fact that in animal models, we see this dramatic reversibility of symptoms. The fact that brain cells aren’t dying in Rett syndrome gives me hope that even older adults may be able to have symptom improvement. The fact that we have six different strategies that we’re pursuing in parallel, the fact that we’re making progress, the fact that we’re attracting biopharma—all of that makes me hopeful that we’ll be able to deliver on our mission.

Best organization decision: To focus on the root cause of the disease and not be distracted by anything else.

Hardest lesson learned: That research takes time.

Toughest organization decision: Realizing that for us to focus on our mission, which is to cure Rett syndrome, means we have to say “no” to projects that would add to our knowledge base but wouldn’t necessarily move the needle on cures.

Biggest missed opportunity: It is frustrating to not be able to fund certain things more aggressively just because we have limited resources. Our mission is so urgent and so personal that to have money stand in the way of making things go faster is frustrating.   COVID hasn’t made things any easier.

Like best about the job: It takes away some of the helplessness that having a child with Rett Syndrome makes you feel. Even on the horrible days where my daughter might be in the ICU, or struggling with seizures, even on the worst days, there’s still something constructive that I can do to hopefully help her and others eventually.

Like least about the job: It saddens me to have to talk on an ongoing basis to families who’ve received their diagnosis and to know what’s in store for their child and for them. I’m talking to grieving parents all the time.

Pet peeve: People who don’t do their job well.

First choice for a new career: I’d be a scientist.

Personal Taste
Most influential book: The Puzzle People: Memoirs of A Transplant Surgeon by Thomas Starzl. It makes the case that in order to have medical advances, you have to take risks, and you have to persevere.

Favorite movie: I like lighthearted movies. One of my favorites is It’s Complicated with Meryl Streep and Alec Baldwin.

Favorite music: I listen to all sorts of music.

Favorite food: Pesto

Guilty pleasure: Wine

Favorite way to spend free time: Reading science papers