Welcoming Dennis Rinaldi to the Board of Directors at the Proteus Syndrome Foundation

December 02, 2025•3 min read

A Meaningful Addition

The Proteus Syndrome Foundation (PSF), a 501(c)(3) nonprofit dedicated to supporting individuals and families affected by the rare Proteus syndrome, proudly welcomes Dennis Rinaldi to its Board of Directors. His appointment represents a significant and heartfelt step forward for the organization, bringing together professional experience, personal connection, and a deep commitment to service.

A Voice Already Known to — and Loved by — the Community

Dennis has long been an active and passionate volunteer with the Proteus Syndrome Foundation. His involvement has gone far beyond occasional participation; he has been a consistent presence, offering support, connection, and leadership to families navigating the challenges of this rare condition.

In 2024, Dennis served as the keynote speaker at the NIH/Proteus Syndrome Conference in Bethesda, Maryland, one of the most important annual gatherings for clinicians, researchers, and families. His keynote centered on courage, community, and the legacy of his late little brother, Daniel J. Rinaldi, whose life continues to inspire Dennis’s advocacy.

Later that year, he delivered the keynote at PSF’s international conference, where his message of hope and unity left a lasting impact on attendees from around the globe.

Building Community Through Action: The First-Ever Proteus Syndrome Family Camp

In 2025, Dennis helped create and launch a historic milestone for the Proteus community: the first-ever Proteus Syndrome Family Camp, held at the Barbara C. Harris Camp in New Hampshire.

This unforgettable three-day experience welcomed 12 families from across the world, offering a rare opportunity for connection, healing, joy, and shared understanding. Families laughed, learned, adventured, and bonded through a series of group activities and reflections — forming lifelong relationships rooted in shared experience.

Dennis led the creation of this camp in loving memory of his late brother Daniel, honoring Daniel’s spirit by giving families a space filled with hope, belonging, and togetherness. The camp quickly became one of the most meaningful initiatives in the foundation’s history, and its success has inspired plans for ongoing annual gatherings.

Why Dennis’s Leadership Matters

A Personal Journey That Fuels His Purpose

Having walked this path with his brother, Dennis brings empathy and understanding that cannot be taught. His work is driven not by obligation but by love — a powerful force for change.

A Proven Commitment to Service

Whether speaking at international conferences, building family programming, or volunteering behind the scenes, Dennis has consistently shown up for the Proteus community in meaningful, lasting ways.

Professional Expertise That Strengthens the Foundation

With experience as a behavioral health coach, educator, and nonprofit professional — supported by a Master of Public Administration — Dennis offers skills that strengthen PSF’s governance, outreach, and long-term strategy.

A Builder of Community and Connection

The success of the inaugural family camp demonstrates his capacity to bring people together, create new traditions, and bridge emotional and geographic distance within a global rare-disease community.

About the Proteus Syndrome Foundation

Since 1992, PSF has been dedicated to supporting and connecting families affected by Proteus syndrome, advancing research, and fostering a compassionate international network. The foundation’s work includes:

Funding research into Proteus syndrome and the AKT1 mutation
Providing education and resources to families, caregivers, and clinicians
Offering emotional and peer support to those navigating rare-disease challenges
Uniting families worldwide through conferences, community events, and now — for the first time — camp experiences

A New Chapter of Leadership and Hope
With Dennis Rinaldi joining the Board of Directors, the Proteus Syndrome Foundation embarks on a new chapter filled with momentum, compassion, and vision. His leadership is shaped by personal loss, professional strength, and a genuine love for the families he serves.
From delivering keynote speeches to building the first Proteus Family Camp, Dennis has already made an extraordinary impact — and his presence on the board promises to further strengthen PSF’s mission for years to come.
His brother Daniel’s legacy lives on in every family supported, every connection built, and every moment of hope created.

Dennis Rinaldi

Dennis Rinaldi is a former college basketball player who developed a deep passion for leadership, teamwork, and mentorship both on and off the court. Dennis Rinaldi, has called the Connecticut Shoreline home for the past 13 years he brings over a decade of experience in leadership, coaching, and education to his work with families and young athletes. A former standout college basketball player, Dennis has spent years both on and off the court helping individuals reach their full potential. With five years in nonprofit leadership, Dennis has worked closely with youth and families, developing programs that support personal growth, teamwork, and community engagement. His hands-on experience in high school basketball coaching allows him to connect deeply with student-athletes, helping them navigate challenges on and off the court with confidence and discipline. As an adjunct professor, Dennis also brings a thoughtful and academic perspective to his coaching approach, combining real-world experience with evidence-based practices. His work centers on building strong, trusting relationships with families and empowering young people to become resilient, purpose-driven leaders. Whether coaching on the hardwood or mentoring in the classroom, or helping navigate challenges in the community or at home Dennis is committed to creating supportive environments where individuals and families thrive.

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