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Our Story
APDS began with a simple but powerful need:
To help families feel less alone while navigating a rare and often misunderstood diagnosis. From that need, a community was built to bring clarity, connection, and hope to those affected by Activated PI3K Delta Syndrome.
Our Mission
The journey of living with Activated PI3K Delta Syndrome (APDS) is often filled with uncertainty, unexpected turns, and challenges that can feel overwhelming at times. The APDS Rare Disease Coalition was created to ensure that individuals and families affected by APDS never have to navigate that path alone.
Founded in Monticello, Utah, our mission reaches across the United States and around the world through awareness, education, advocacy, and community support.
We are committed to helping families access trusted information, connect with supportive resources, and feel empowered throughout every stage of diagnosis and care. By collaborating with researchers, healthcare providers, advocates, and policymakers, we strive to deepen understanding, strengthen support systems, and foster hope for the future of the APDS community.
At the heart of our mission is a simple belief: every rare disease family deserves connection, compassion, and a community that understands.
Our Vision
We envision a world where every family affected by APDS is met with understanding, support, and hope from the very beginning of their journey.
By raising awareness, encouraging early diagnosis, supporting research, and building strong community connections, we aim to create a future in which individuals living with APDS have greater access to care and resources and the reassurance that they are never alone.
Why the Chameleon?
Within the rare disease community, the zebra is widely recognized as a symbol representing conditions that are often overlooked or difficult to diagnose. For APDS Rare Disease Coalition, however, we chose the chameleon as a symbol of the invisible nature of Activated PI3K Delta Syndrome (APDS).
Like a chameleon, many individuals living with APDS blend into the world around them. From the outside, their challenges may not always be visible—but beneath the surface, APDS can affect many aspects of daily life in complex and deeply personal ways.
Our chameleon represents resilience, adaptation, and the importance of being truly seen and understood. We invite you to look closer, learn more, and walk alongside our community as we raise awareness, support families, and bring hope to those affected by APDS.
You Are Not Alone
Whether you are newly diagnosed, searching for answers, supporting a loved one, or simply learning more about APDS, we want you to know that you are not alone.
At the APDS Rare Disease Coalition, we are committed to building a community rooted in compassion, connection, education, and hope.
Together, we can continue raising awareness, supporting families, and creating a brighter future for everyone affected by Activated PI3K Delta Syndrome.
Meet the Medical
Advisory Board
Our Medical Advisory Board brings together leading experts in immunology and related fields who provide clinical insight, guidance, and support for APDS education and awareness.
Andrew M. Smith, MD, MS,
Board-Certified Allergist & Immunologist
Allergy Associates of Utah
Dr. Smith is a fellowship-trained allergist and immunologist specializing in allergies, asthma, and immunodeficiency disorders. He provides comprehensive, patient-centered care and has extensive experience in both clinical practice and research.
Learn More →
Ahmad Rayes, MD
Pediatric Immunology & Transplant Physician
University of Utah / Primary Children’s Hospital
Dr. Rayes specializes in pediatric immunodeficiency and hematopoietic cell transplantation. He leads multidisciplinary programs focused on complex immune disorders and advancing treatment options for children with rare diseases.
Learn More →
Meet Our Board of Directors
Gordon Kelley
Gordon is the Founder of the APDS Rare Disease Coalition and a dedicated advocate for individuals and families affected by rare disease. Living with APDS himself, he created the Coalition to increase awareness, improve education, and strengthen support for the global APDS community. Through collaboration, advocacy, and lived experience, he works to ensure patients and families feel seen, connected, and empowered throughout their journey.
Unita Cheeseman
Unita Cheeseman holds a B A in Health and Wellness , and is a Certified Nutritional Counselor. She is passionate about rare disease advocacy as a person with both a rare disease diagnosis, and as the mother to a thrice rare child.
Tara O'Connor
Tara O'Connor is the Vice President and Director of Advocacy & Awareness for the APDS Rare Disease Coalition and a dedicated rare disease patient advocate. After living with symptoms since the age of two and waiting more than 20 years for diagnoses of most of her rare and chronic conditions, she is passionate about raising awareness, educating communities, and empowering patients to find their voice. Through advocacy, public speaking, and outreach, Tara works to improve understanding, increase access to resources, and ensure that no one feels alone in their rare disease journey.
Damian Tangle
Damian is the Director of Social Media & Outreach of the APDS Rare Disease Coalition and an advocate for self-advocacy and quality of life for individuals living with APDS. Diagnosed at the NIH in 2017, he brings lived experience of navigating chronic illness and emphasizes the importance of speaking up for one’s needs within healthcare. He is passionate about helping others live fully beyond their diagnosis through awareness, resilience, and support.
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