Monica Dudley-Weldon, President, CEO & Founder of SYNGAP1 Foundation, is a true professional in a challenging and competitive business, standing on the same podium as world-renowned corporate and key opinion leaders. As an advocate, she is considered the barometer for what an individual should strive to become. Monica is one of the most dedicated and compassionate leaders to work with! She has quickly accomplished many significant milestones by developing and leveraging essential partnerships and relationships and investing in initiatives with a high impact. She has become a powerhouse and tireless in rare disease advocacy and research. Her work has been the catalyst for substantial advances in neuroscience. Her willingness to share her knowledge and expertise with others creates a ripple effect of excitement within the patient advocacy community. Her constant work ethic to get her SYNGAP1 families "research-ready" by starting and maintaining a patient data registry, attending and speaking at many rare disease conferences, raising funds through grants and events, and even finding time to participate an author on published, indexed research papers.

In the rare disease space leading a not-for-profit is incredibly difficult. Many consists of women executive directors and CEOs. The vast majority are primarily mothers who have spearheaded efforts, like Monica, to find treatments and cures for their children. The need to support and encourage one another is critical. “As the genomic era is rising in innovation, my journey to educate myself comes from those in front of me. Paying forward and teaching strategy and new innovative ways to navigate a changing and fluid space to others make you a successful leader,” says Monica. “Being considered a pioneer, it is a duty to model for those to learn from your mistakes and successes, as we are all essentially tied together in some form or fashion. As a leader, you must teach and be teachable.”

The perseverance and tenacity mixed with a positive outlook to motivate others are compelling traits she naturally has. The passion in how she carries herself, giving hope and inspiration, shows those she meets encouragement to help those who are the most vulnerable at any cost. Her personal touch, being approachable and transparent, allows others to express themselves and explore new ideas that help change the landscape. She is a listener and a lifelong learner, inspired by her first career in 23 years of being an educator. Her experience of motivating young minds has carried over into a more extensive classroom, teaching others how to think as if there is “no box.”

The most important leadership lesson Monica has learned as a female leader is not to make decisions based on emotion throughout her career. Depending on the role, the ability to take one hat on and off takes pausing to determine how one reacts to a situation. According to Monica, communication is key to being a great leader. “The ability to listen carefully to how you relay messages to others takes practice and thinking about your tone and specific words. A woman leader must also have the savvy to know how to be confident and not come across as arrogant. Being the creatures we are, I think women leaders have a unique charm that can show a hint of empathy without appearing to be weak.”

SYNGAP1’s most significant achievements as an organization were based on a gene mutation and not a named disease. Their concept centers around how the SYNGAP1 gene manifests itself in the brain based on the symptoms present in our patient community and how they overlap with other neurological disorders. Creating a business model based on how a gene works brought us to coining the process of “Reverse Engineering of Drug Development.”

The same concept applies to teaching a classroom lesson and administering a test. “The question then becomes; how will we pass the test? First, you must understand your objectives and apply them to real situations to make a connection. The same concept can be accomplished by following a path to drug development, just in a different order. The goal is to get treatment. Taking a step back, you must know how to get a drug approved,” explains Monica. “Taking these steps from the beginning will ultimately cut the time by learning how to be more strategic in the steps you must take to get there. We discovered the SYNGAP1 (MRD5) Natural History Study and Registry data by following this model in the first four years of operation. We found the mechanism in the SynGAP1 protein that controls Sensory Processing Disorder linked to Autism.” This discovery has opened new doors to how the brain develops and how other neurological disorders are related to the most abundant protein in the brain. WL