RORA Mom to Elliott

Founder and President of RORA Compass

Natalie is a proud mother, mission-driven leader, and passionate advocate for children with rare neurodevelopmental disorders. Inspired by her journey parenting Rory and Elliott, Natalie founded RORA Compass to connect families and catalyze progress.

Elliott was diagnosed with intractable epilepsy and neurodivergent developmental challenges before his first birthday and received a de novo RORA genetic variant diagnosis around the age of two. RORA-related disorders impact entire families, and Natalie wants to help other families navigate the joys and the hardships in community with one another. 

As a senior business leader, Natalie brings 18 years of experience advising transformational programs across public and private sector clients, with deep expertise in the government, education, and nonprofit sectors. She brings deep expertise in strategy, workforce transformation, and organizational change. Natalie holds an Executive Certificate in Nonprofit Management from Georgetown University and has served as a long-standing trustee for organizations focused on human services and science education. 

Grounded in empathy, fueled by service, and driven by results, Natalie will deliver lasting mission impact to RORA Compass and our community.

RORA Mom to Sawyer Mae

Founder of RORA Gene Disorder Facebook Group

Being a mom to a child with a RORA diagnosis is a journey of deep resilience, learning, and love. It has lead to complex challenges, including developmental delays, communication difficulties, and behavioral differences, but also beautiful revelations. Every day brings a mix of uncertainty and discovery, as you advocate for your child's needs while celebrating their unique strengths and small victories. 

As a driven mother and a RN with years of studying conventional medicine, Jenn has come to a powerful realization: our bodies are designed to heal themselves. Jenns journey, both as a healthcare professional and as a mom to a child with unique medical needs, has taught her that healing isn’t always about more medications or endless treatments. True healing often begins with the basics — nourishing the body with real, whole foods, staying active in ways that feel good, and creating emotional balance in our daily lives. It’s about tuning in, not just treating symptoms. 

In the midst of navigating her child's RORA diagnosis in 2018, Jenn created a Facebook group dedicated to families affected by RORA gene mutations.  Jenn knew we needed more than medical texts (which was and still is very limited) - we needed each other. The group became a space to share stories, exchange information, and offer support through a journey that can feel incredibly isolating. 

“By connecting with other families, we’re not just finding answers, we’re finding hope.” - Jenn

RORA Dad to Sanford

NYC-Based Parent Advocate

Eric is the proud father of Sanford, a joyful, resilient child diagnosed with a RORA-related genetic disorder, autism, and other developmental challenges. From the moment of his diagnosis, Eric knew that being his parent would mean stepping into a new world—one filled with unknowns, but also with fierce love and unwavering determination.

Living in New York City, he quickly learned that accessing the right services wasn’t just about asking—it was about fighting. Over the past few years, Eric successfully litigated multiple impartial hearings against the NYC Department of Education, securing funding and reimbursement for Sanford’s essential therapies, 1:1 instruction, and specialized school placement. These were hard-won victories, not just for his son, but for what every child deserves: a chance to grow and learn in an environment that sees and supports them.

Through this process, Eric has become not only an advocate for Sanford but also a resource for other families navigating the complex and often isolating world of neurodivergence and rare neurodevelopmental disorders. The RORA community is still growing—and so much of what we know comes from one another. He is honored to be part of a movement that turns lived experience into shared strength.

In his profession, Eric assists top-tier real estate operators / sponsors in forming Joint Ventures by sourcing institutional JV partners on their behalf. His expertise lies in managing equity investments and has raised over $250MM in equity to date.

To support our research heroes and their critical work while advocating for the RORA community’s needs in scientific endeavors.

To support our parent volunteers with expertise in strategy, operations, finance, marketing, and general nonprofit management.

To support RORA families and individuals and to meet them where they and provide connection, community, and resources.