Rare Leader: Monika Jones, CEO, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation

The Basics
Name: Monika Jones

Title: Co-Founder and CEO

Organization: The Brain Recovery Project: Childhood Epilepsy Surgery Foundation

Disease focus: We help children reach their full potential after brain surgery to stop seizures.

Headquarters: Los Angeles, California

How did you become involved in rare disease: My son was born with a very rare condition called hemimegalencephaly. That’s a fancy way of saying that half of his brain was large and deformed. One of the hallmarks of this condition is drug-resistant seizures. Most children with this condition require surgery known as a hemispherectomy, a procedure where half the brain is either removed or completely disconnected from the other side. Our son had a hemispherectomy at 3 months old.

Previous career: I was an attorney. I had several jobs as a litigator or in-house general counsel. For a short-time I was also an insurance executive.

Education: B.A. in geography from the University of California, Los Angeles and J.D. from the University of Southern California.

The Organization
Organization’s mandate: We want kids to be the best they can be after brain surgery to stop seizures. That means helping parents understand when it’s time to consider brain surgery. Getting the child to surgery as early as possible typically means better cognitive and functional outcomes. That’s a really hard decision for a parent to make. We hope we provide them with accurate, research-based information and some guidance. Certainly, the decision for them can be excruciating, but we do want them to have accurate information at the beginning steps. Then, afterwards, we do our best to provide a host of programs and services to help these children, whether it be initiating and funding research that specifically addresses issues or challenges after surgery, providing educational advocacy, guides and web content, conducting family and professional conferences, and connecting with researchers.

Organization’s strategy: It’s complex. Epilepsy is a complex condition. Brain malformations are complex conditions. Neuroplasticity is a complex concept. Education of children with complex disabilities is also complex. Our strategic plan is to tie all these complex pieces together to provide guidance to the parents so their children can reach their full potential. Part of that is identifying research gaps, and there are a lot of them. Initiating research that addresses those research gaps. We are not just focused on physical outcomes. We’re focused on cognitive outcomes and educational outcomes as well. Part of it is translating research into understandable content. There isn’t a lot of research after hemispherectomy, for example, as relates to physical therapy. But we can certainly pull from the world stroke and cerebral palsy for our guidance. We are always pushing forward on new research. If you think that it’s easy to teach a school how complicated these children can be in terms of their educational environment, you would be wrong (laughs). We develop programs and guides for our parents that help them in the school environment and help educators understand the challenges the kids will have.

Funding strategy: That’s the tough part. We serve a relatively small community of children. We do our best to get donations from the families that we serve, but they are quite tapped. We have a few anonymous donors who provide us with a significant amount of support. We’ve had some success in the last two years with private grants and foundation grants.

What’s changing at your organization in the next year: We are scaling up really fast. What’s changing is the breadth of services we will be providing. We have expanded to include all of the epilepsy surgeries. Historically, we were just funding research on hemispherectomy functional outcomes. But that comes a little bit of growing pains.

Management Style
Management philosophy: I remind our team quite often that we are obsessed with the children and families we serve. Everything we do has to be focused on improving their outcomes. The children have a range of disabilities—some multiple, significant disabilities, while others have only mild disabilities. Many of the children we serve can go to college. We have to be sure to always be thinking of the spectrum of outcomes. I really hope the people who work for me can self-manage because we are small. My management philosophy is making sure everyone on the bus is good at what they do, smart, and knows where we’re going.

Guiding principles for running an effective organization: Making sure everyone on the bus is the right person. Hire slowly, hire right, stay focused, and make sure you are surrounded by a top-notch team.

Best way to keep your organization relevant: Providing programs and services that are meaningful. The families we serve want help. Our web content must be excellent. Our conferences must be excellent. Our research programs must provide information we can use to turn around and provide meaningful help to the kids. That keeps us relevant.

Why people like working for you: I’m scrappy. I will figure stuff out and tackle challenges head on.

Mentor: I’m not sure mentor is the right word, but I‘ve been receiving great guidance from Amy Miller, the Executive Director of the Child Neurology Foundation. Just changing my mindset from competitive to collaborative in our community and reaching out to other organizations for help. In a short amount of time I’ve learned so much from her about how to be a collaborative partner in the non-profit rare disease space.

On the Job
What inspires you: The kids. The challenges. What parents are posting on Facebook. What they still don’t understand. What they are still not learning from their doctors. What’s still so complicated for them. My son, who’s had ten brain surgeries, and is still trying. He’s had a rough road. He doesn’t speak and we’re teaching him to walk for the third time, but the kid does not give up.

What makes you hopeful: Progress. Movement forward. Information. I’m an answer person. I want answers. I want results. Results give me hope.

Best organization decision: Expanding our reach to help all the children who have had epilepsy surgery, not just hemispherectomy.

Hardest lesson learned: Don’t move too fast. You will make mistakes.

Toughest organization decision: Being unable to expand a program or having to slow a program down because of funding.I wish I didn’t have to do that. I wish money wasn’t holding us back.

Biggest missed opportunity: Collaborations with some researchers that fell through the cracks when a staff member left and then my son got very ill from hydrocephalus.

Like best about the job: I couldn’t love it more than I do. I love learning about neuroscience. It feeds my intellect, but it makes me second guess myself all the time. It’s difficult and a lot of work, but I love it because it helps me serve our families.

Like least about the job: Spreadsheets and budgeting.

Pet peeve: People who don’t do what they say they are going to do.

First choice for a new career: I wouldn’t mind becoming a neuroscientist. Or, I would also like to own a tiki bar on an island somewhere.

Personal Taste
Most influential book: A Short History of Nearly Everything by Bill Bryson.

Favorite movie: I wish I could say Cinema Paradiso, but if Sixteen Candles is on tv, I have to watch it.

Favorite music: I’m an ‘80s teenager. All the ‘80s music.

Favorite food: Drunken Noodles

Guilty pleasure: Interior design magazines and drinking too much wine with my girlfriends.

Favorite way to spend free time: Exhaling for a brief moment. I don’t get a lot of down time.

May 3, 2018