Get to Know Marissa

My journey with CDKL5 deficiency disorder began in 2016 when my infant son, Gregory, received the diagnosis. Hearing that my new baby would likely never walk or talk and would face a lifetime struggle with seizures, I felt utter despair and deep sadness. Over time, I transformed that heartache into purposeful action, and found meaning in making a difference for my son and for CDD.

I hold a Master's degree in social work and am passionate about service and making a difference. I love connecting with other CDKL5 families, especially fellow CDKL5 boy moms. I believe that all people deserve to eat real food, even if by feeding tube, and I enjoy talking with others about blending for tube feeding. Creative by nature, I love all things design. Combining that love with skills in communications, marketing, and fundraising, I have been able to successfully champion the CDKL5 cause in a variety of ways.

Advocacy Activities & Appearances

• 2025 - Stakeholder, Pediatric Palliative Care Coalition of Connecticut (PPCC-CT)

• 2024-present - Producer, content creator, & co-host of CDKL5 in Color podcast with fellow CDKL5 mama, Amanda

• 2024 - Published author in Therapeutic Advances in Rare Disease

• 2024 - Presenter "Feeding Kids with Tubes" at the IFCR's CDKL5 Family Conference

• 2024 - Certificate: Family Support Specialist (Child Neurology Foundation)

• 2024 - Certificate: Social Media Marketing & Fundraising (Nonprofit Tech for Good)

• 2024 - Guest on Rarely Normal podcast discussing rare and CDKL5

• 2023-present - Participant on Rare Epilepsy Caregiver Advisory Panel (RECAP)

• 2022 - Panelist talking summer seizure action planning with DEE-P Connections

• 2022 - Guest blogger for Natural Tube Feeding

• 2022 - Guest on Once Upon a Gene podcast discussing motherhood and CDKL5

• 2020-2024 - Board Member, International Foundation for CDKL5 Research (IFCR)

  • • • Community engagement, fundraising, & fund development

        • Committee Chair: Move CDKL5 Forward event planning committee 2021-2024

      • Social media, marketing, design, brand awareness, & content creation

      • Trained Family Support Representative (FSR) offering caregiver support

• 2019 - Panelist at the CDKL5 Patient Focused Drug Development meeting with the FDA (29:29) 

• 2018-2021 - Event planner and host of Support for Starfish Virtual 5K annual fundraiser for CDKL5 research (later changed to Team Support for Starfish as part of the IFCR's Move CDKL5 Forward event)

• 2018 - Began Art for Hope Love Cure, a collaborative art project with Gregory that also served as a fundraiser for CDKL5 research

• 2016 - Gregory was diagnosed, held first fundraiser for CDKL5 research

Services

Marissa is available for consultation about CDKL5 deficiency disorder, medically complex caregiving, and blending for tube feeding. She is also available to small organizations for help with content creation, podcast production, and fundraising strategy.

Email: cdkl5incolor@gmail.com