Name: Monica Weldon
Title: Founder, President, CEO
Organization: Bridge the Gap: Syngap Education and Research Foundation
Disease focus: Syngap1 syndrome, which causes intellectual disabilities, seizures, autism spectrum disorder, global development delays, behavioral abnormalities, and a variety of other potential symptoms. It was first discovered in humans in 2009.
Headquarters: Cypress, Texas
How did you become involved in rare disease: My son has the disorder. He’s nine and a half—Beckett. He was the first one diagnosed at Texas Children’s in 2012. At the time he was diagnosed, he was one of six in North America with the syngap1 mutation. When he was diagnosed, there was one paper on the disorder. I did what every other person would do and went to Google. There was nothing there. One thing that came up was an ad for Global Genes in the side bar. It said “Do you want to get involved? I didn’t even know what I was doing and clicked through. I knew I was excited to find a world I knew nothing about and got involved in advocacy. I went to the Global Genes Summit. I went to some sessions, and I said the only way I’m going to make anything happen is to learn from these people and drive research. We have built the organization from the ground up. We’re in our third year. We’ve had our first international conference to bring all the stakeholders together, and used that as a catalyst to bring together all the scientists in the world studying the gene.
Previous career: I was a science teacher for 23 years. I taught college level and sixth grade to 12th grade.
Education: B.S. in biology and psychology from East Texas Baptist University, Certificate in Secondary Science, life teaching certificate in biology.
Organization’s mandate: Our mission is to raise awareness, raise funding, and drive research. We have four programs that we are funding. We have our natural history patient registry that we won a grant for from The National Organization for Rare Disorders and the FDA. We have our scientific conference, which is coming up in Jupiter, Florida. Another program we have is our family meet-ups. And then we have our centers of excellence. We have one at the Kennedy Krieger Institute at Johns Hopkins and one at Texas Children’s Hospital at Baylor. We have two right now that were in talks to establish in the United States. Our goal is to reach out to Europe and get one established near Sheffield.
Organization’s strategy: Our top priority is our natural history. We are trying to align our centers of excellence to build a natural history, so they are collecting data in the same way. We are trying to create our surveys and natural history to target specific things we see in the community, so we can find a measurable endpoint for a clinical trial. We are gathering that data to align it with mouse model data that’s been developed over the last 20 years (the gene was discovered in mice long before humans) to try to find a mechanism.
Funding strategy: It’s really hard to get money from industry because we don’t have a molecule yet. Most of our money comes from individual donors. We do two large events. We did our walk, and we are doing our second golf tournament in May. We have a very involved family group. We’ve started a family advisory committee to try to keep them in the loop of what we are doing. That’s increased our donor base. We’re doing the Rare Carousel for Rare Disease day. We do a fundraising event every year on Rare Disease Day.
What’s changing at your organization in the next year: We’re looking to add more board members. We’ve put a few invites out there. We have five board members right now, but we want to build out the expertise, and make better business decisions. We are going to have our second family meet-up in Montreal, and our international meeting. We are continuing to drive down the road with research. We are doing a project with Face2Gene (facial recognition software to help diagnose genetic diseases). We are collecting photographs to try to find an algorithm to help the diagnosis rate.
Management philosophy: I have an open-door policy. I believe communication is key. I like listening to different people’s perspective. I believe that’s important. You have to be opening to listening to other people. Also, honesty is important. I don’t beat around the bush. I want people to be direct with me and I am direct with others.
Guiding principles for running an effective organization: Teamwork and communication. You have to have different skill sets available to you, and you have to have a good team. If you don’t have a good team, the ball stops rolling.
Best way to keep your organization relevant: We have a willingness to share data with everyone and not silo it. I’ve got to make sure that we have the data available for people. Data is everything. Data is our goal. That’s what’s keeping us in the forefront of the space.
Why people like working for you: My personality is real. I am approachable. I hope I’m fun. I have a passion, and I believe in this. I believe in never stopping. I taught my students in school, when you quit, you failed. It doesn’t matter if you tried and got a zero. It matters if you stop and quit. You never fail unless you quit.
Mentor: Global Genes and Nicole Boice. They were there when I needed them. That for me is where I got started. Another rare disease advocate who took me under her wing when I started was Pamela Mace, who runs the Fibromuscular Dysplasia Society of America. She has been with me since then. She has helped drive and put us on the map. I’ve gotten so much advice from her over the last four years. I don’t know what I’d do without her.
On the Job
What inspires you: When I get a call from a parent of a brand new diagnosed patient, and they say, “I’m so glad I found you.” I helped create something that those people coming behind me could go to for help. The patients in my group inspire me to keep going.
What makes you hopeful: I believe in the impossible. If you don’t stop, you can make the impossible possible. We might not cure these kids’ ailments, but we can improve their quality of life.
Best organization decision: To select the board members I have who have stayed with me from the very beginning. If you don’t have a good board, you are not going to have a good organization. And having an international stakeholder meeting. That was a catalyst that brought us to where we are now. I would advise any organization that, if you haven’t had a stakeholder meeting, get those patients in with those scientists and clinicians. You need to do that. And if you don’t have a registry with a natural history component, you need to do that because data is everything. It is what is going to drive the money into research. Without data, you don’t have any assets. You don’t have anything to invest in. It’s not just about awareness. It’s about having something of substance.
Hardest lesson learned: The hardest lesson for me, because of my personality, is that you can’t trust everybody. You have to vet everyone, even the organizations you are partnering with. You can’t trust everybody. My personality is to give everyone the benefit of the doubt. The question you need to ask is, what do they want from me, and how are we going to benefit? If you can’t get a solid, credible answer, then you don’t need to deal with it. Does it drive your mission? That should be the first question. That’s the biggest lesson I’ve learned.
Toughest organization decision: To end a partnership with another organization, even though they were great, because our ideas were different.
Biggest missed opportunity: A grant we missed writing our first year for a patient registry.
Like best about the job: I love the science. I love the people. I love knowing that I helped. I love the travel. I love networking. I love to teach people, and I love to learn from people. I love creating something that’s going to benefit the people that come behind us.
Like least about the job: Having to sit down with a parent who is well intentioned, and having to discuss the reality of this situation. Taking off the mom hat and explain to them it’s going to take time, and why things are so slow, and the decisions we have made. We are limited right now with the resources we have.
Pet peeve: Not answering my emails.
First choice for a new career: A regulatory or administrative-level position at the FDA or NIH. I love policy. It’s where a lot of things change because the policy at the top is what gets us the money down here for research. Also, being a special needs mom, working at the state level to help better the lives of children with special needs.
Most influential book: 90 Minutes in Heaven by Don Piper and Cecil Murphey. Every struggle he faced put him on a new path.
Favorite movie: The Notebook. I’m a romantic a heart
Favorite music: Alternative rock, hard rock, and pop. I like Metallica and Three Doors Down.
Favorite food: Any kind of seafood
Guilty pleasure: Chocolate. I have a big bucket of it on my desk.
Favorite way to spend free time: Getting my nails done with my daughter and spending time with my five kids. My three oldest are adults.
January 12, 2018
Photo: Monica Weldon