Who We Are
Megan Manotti
Founder and CEO
Megan Manotti is the Founder and CEO of Beyond Primrose ZBTB20 Foundation and the mother of Logan, a young child living with Primrose Syndrome. In 2025, after Logan’s diagnosis, Megan and her husband transformed their family’s fear and uncertainty into action, bringing together families, clinicians, and researchers from around the world to build the first organization dedicated exclusively to Primrose Syndrome and ZBTB20-related conditions.
A registered nurse at Penn Medicine, Megan has seen firsthand the power of research and what motivated advocacy communities can achieve. She brings both clinical insight and deep compassion to her work, leading Beyond Primrose with a clear mission: to accelerate research, build global patient registries, advance meaningful treatments, and provide support and resources to the broader Primrose community. Under her leadership, the foundation has launched collaborations with leading institutions, connected a growing global network of Primrose families, and established a multidisciplinary Scientific Advisory Board.
Megan believes families should never be told there is “nothing to do,” or feel isolated and hopeless after a diagnosis. Through Beyond Primrose, she is helping turn a rare diagnosis into a roadmap for discovery, hope, and a better future for everyone impacted by Primrose Syndrome.
Julie Caudill
Co-Founder
Julie Caudill is the co-founder of the Beyond Primrose ZBTB20 Foundation and the devoted mother of Cellie, whose journey with Primrose Syndrome inspired her to help unite a global community of families, clinicians, and researchers committed to advancing research and improving lives.
Julie is at the heart of Beyond Primrose’s family engagement efforts. Her passion for connecting families, building community, and amplifying parent voices is central to the foundation’s mission.
Through her advocacy and collaborative spirit, Julie helps guide community outreach, family support initiatives, and efforts to raise awareness of Primrose Syndrome. She believes in empowering families with information, resources, and hope, while partnering with the scientific community to accelerate the search for therapies and improved outcomes for everyone affected.
Peter Manotti
Chief Financial Officer
Peter Manotti serves as Treasurer of the Beyond Primrose ZBTB20 Foundation and is the proud father of Logan, who inspires the foundation’s mission every day. With over 20 years of experience in the commercial real estate industry, Peter is a Senior Managing Director with CBRE’s Valuation & Advisory Services Group, where he leads valuation teams and provides strategic market insights across key Northeast markets.
His professional expertise includes complex property valuations, feasibility studies, portfolio analysis, and financial advisory services for a broad range of institutional clients. Peter brings strong financial leadership, analytical precision, and a commitment to excellence to the foundation’s board, ensuring effective stewardship of resources to advance research, community support, and therapeutic development for families affected by Primrose Syndrome.
Robin Glass
Secretary
Robin Glass serves as Secretary of the Board for Beyond Primrose ZBTB20 Foundation. She is a wife and mother of two boys living in Philadelphia, and the proud godmother of a child recently diagnosed with Primrose Syndrome. Professionally, she works at The Wharton School of the University of Pennsylvania as Associate Director of Event Strategy in the MBA Admissions and Financial Aid Office, where she leads virtual and in-person engagement initiatives. She brings her expertise in event strategy and community building to the foundation’s work. Joining the board is deeply personal for her, as she is committed to helping children and adults with Primrose Syndrome lead healthy, fulfilling lives. She believes this foundation will play a critical role in advancing research, raising awareness, and educating others about the syndrome.