The Rare Society Foundation was created from a deeply personal place.
Our foundation exists to support individuals and families affected by rare diseases—beginning with Malan Syndrome—in honor of my sweet godson and nephew, Noah. Like so many families navigating a rare diagnosis, Noah’s journey revealed both the strength of the rare disease community and the profound gaps in awareness, resources, and support that still exists.
We founded The Rare Society Foundation to help close those gaps—to elevate visibility, foster connection, and create meaningful support for families walking similar paths.
Inspired by Noah
The Story Behind The Rare Society
What started as a desire to give back to the Malan Syndrome community, and support families like Noah’s, quickly grew into something more.
Our earliest efforts centered around community-driven charity golf tournaments—bringing together friends, families, and supporters to raise funds, build awareness, and create moments of connection around a shared purpose, Malan Syndrome. Golf became a natural starting point: accessible, inclusive, and rooted in camaraderie.
Over time, we expanded that spirit into another passion that has always brought people together for us—wine and food.
Through thoughtfully curated wine and dinner events like Judgement Revisited, we now extend our mission into experiences that celebrate history, storytelling, and community. These events are not about exclusivity; they are about gathering people around something rare and meaningful, and using that moment to shine a light on rare diseases and the families they impact.
Whether on the golf course or around the table, our events are designed to transform shared experiences into lasting impact.
The People Behind the Mission
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Mary Riesland
FOUNDER & PRESIDENT
Mary Riesland is the Founder and President of The Rare Society Foundation. She brings a background in business strategy, community leadership, and philanthropic fundraising, with a strong track record of organizing mission-driven events that build connection and impact. Over the past five years, Mary has actively supported her children’s school community through volunteer leadership and fundraising initiatives, helping to strengthen educational programs and family engagement. Mary helped found and lead the annual Sunflower Open charity golf tournament, a growing fundraising event dedicated to supporting the Malan Syndrome Foundation. She also conceptualized and leads the Judgement Revisited event, a premier charitable wine dinner created to raise awareness and significant funds for Malan Syndrome. As President, Mary oversees strategic direction, organizational development, and fundraising initiatives, working to build a sustainable platform that meaningfully supports families affected by rare diseases. -
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Phillip Riesland
CO-FOUNDER & VICE PRESIDENT
Phillip Riesland is the Co-Founder and Vice President of The Rare Society Foundation. He brings a background in business development, strategic partnerships, and financial planning, with experience leading growth initiatives and building long-term stakeholder relationships. Phillip has played an integral role in conceptualizing and organizing the Foundation’s flagship fundraising initiatives, including the Judgement Revisited charity wine dinner. As Vice President, he supports strategic planning, fundraising strategy, and operational oversight, working closely with the President and Board to ensure the Foundation’s mission to support the rare disease community is advanced with integrity and sustainability. -
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Chris Murray Underdown
TREASURER
Chris Murray Underdown is an experienced nonprofit accounting and financial management professional with deep expertise in financial oversight and governance. She brings a strong background in accounting practices, and organizational financial controls within mission-driven institutions. As Treasurer of The Rare Society Foundation, Chris oversees financial governance, supports the development of transparent fiscal structures, and ensures the Foundation’s financial operations align with best practices in nonprofit accountability. Her analytical insight and commitment to responsible financial stewardship are key assets as the Foundation grows and scales its impact. -
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Liz Pinto
SECRETARY
Liz Pinto is the Secretary of The Rare Society Foundation. Liz brings 20 years of biopharmaceutical leadership experience supporting the development, launch, and access of therapies focused on rare and underserved diseases. She has dedicated her work to improving access to care, strengthening education and support, and building patient-centered programs that reflect real-world needs. At her core, she believes in standing up for the underdog and ensuring that every person, regardless of how rare their condition may be, has a voice and a path to care. As Secretary, Liz ensures accurate records and compliance with governance requirements, advancing the Foundation’s mission to serve the rare disease community responsibly and for the long term. -
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Nicole Ivelic
PARENT ADVISORY MEMBER
I am a mom of two, a wife, and a passionate advocate in the rare disease community. In 2021, my son Noah was diagnosed with Malan Syndrome, an ultra-rare genetic condition that forever changed our family’s journey. While the diagnosis was overwhelming, it also gave us a sense of purpose. What began as advocacy for Noah quickly became a mission to support and uplift other families navigating similar paths in the rare disease space.
Through sharing our story, raising awareness, and building community, I am committed to ensuring that families feel seen, heard, and supported—especially when facing conditions that are often misunderstood or overlooked.
Professionally, I have spent 25 years working in Dining and Hospitality within the senior living industry. This work has deeply shaped who I am, instilling in me a strong compassion for others and a lifelong commitment to service, dignity, and care. Helping people—whether seniors, families, or children with rare conditions—has always been at the heart of what I do.
Outside of advocacy and work, I have a deep love for animals and nature, which bring me peace, grounding, and perspective. I am honored to serve as a Parent Advisory Board member and to contribute my lived experience, empathy, and voice in support of families walking rare and extraordinary journeys.
Under One Sky
The story and symbolism behind our constellation mark
Our logo is more than a design. It is a story.
The constellation mark symbolizes rare individuals connected within a greater whole — reinforcing a core belief of The Rare Society Foundation: no one is alone.
Each distinct point of light represents a unique life, a unique diagnosis, a unique story. Some shine brightly. Others are harder to see. But every one of them matters.
The subtle connecting lines reflect something equally powerful — community. They represent advocacy, shared experience, research, and support. They symbolize the transformation of isolation into belonging. When connected with intention, even the rarest points of light form something meaningful.
This constellation is inspired by an artist’s interpretation of the sky on the night Noah received his diagnosis.
That night marked uncertainty. It marked questions. It marked a new and unexpected path.
But it also marked the beginning of connection.
Each star in our mark represents a rare life. Together, they form something stronger — a reminder that while rare disease journeys may feel isolating, families are part of a broader community united by resilience, love, and shared purpose.
We may each navigate different paths.
But we stand under the same sky.
Contact us
We’d love to hear from you.
Whether you’re interested in supporting our mission, partnering on an event, learning more about our programs, or sharing a story connected to the rare disease community, we welcome the conversation.
Together, we can turn awareness into action—and create meaningful impact for individuals and families affected by rare diseases.