2026 Awards
2026 Award Recipients
2026 Researcher of the Year
We are honored to recognize Clement Chow, PhD, as our 2026 Researcher of the Year!
Dr. Chow is an Associate Professor in the Department of Human Genetics at the University of Utah School of Medicine. He has long been passionate about advancing therapies for rare diseases, and his work with the CSNK2A1 Foundation has helped move OCNDS research forward in important ways.
Through his partnership with the Foundation, Dr. Chow has used Drosophila models and drug repurposing approaches to help identify potential therapeutic opportunities for Okur-Chung Neurodevelopmental Syndrome. At our conference last year, he gave two outstanding presentations, one for the scientific audience and one for families, sharing the results of the drug screen and explaining what those findings may mean for future research.
What makes Dr. Chow such an extraordinary research partner is not only his scientific expertise, but how he works with the community. He is collaborative, transparent, responsive, and always willing to meet, discuss new ideas, and connect with other researchers. His questions are thoughtful and family-centered, helping ensure that research priorities stay grounded in what matters most to those living with OCNDS.
Dr. Chow represents what a true research partner to a patient advocacy organization should be.
Clement, thank you for your scientific leadership, your collaborative spirit, and your commitment to advancing therapies for rare diseases. We are so grateful for your partnership and all you do for the OCNDS community!
2026 Volunteer of the Year
We are proud to recognize Tracy Phelps as our 2026 Volunteer of the Year! Tracy shows up, rolls up her sleeves, and gets to work.
Since our very first Drive for Diagnosis Golf Tournament in 2019, Tracy has been a constant source of energy, enthusiasm, and support. Whether she's welcoming golfers at registration, cheering everyone on from the first tee, recruiting sponsors and volunteers, or jumping in wherever she's needed, Tracy makes our mission stronger.
If you've attended our golf tournament, you've probably seen Tracy in action. What you may not realize is that every golfer she welcomes, every sponsor she recruits, and every detail she helps coordinate creates opportunities for research, family support, and hope for OCNDS families around the world.
What makes Tracy truly special isn't just what she does. It's the example she sets. One year, her twins chose to celebrate their birthday by asking friends and family to make donations to the CSNK2A1 Foundation in lieu of birthday gifts. As a parent, there are few greater gifts than watching your children choose kindness, generosity, and compassion. That moment spoke volumes about the values Tracy has instilled and the example she sets every day.
Tracy, thank you for believing in our mission, for giving so generously of your time, and for helping create a brighter future for OCNDS families around the world.
2026 Intern of the Year
We are proud to recognize Grace Branger as our 2026 Intern of the Year!
Grace recently graduated from Vanderbilt University’s Master’s in Genetic Counseling program. Over the past year and a half, she has worked closely with the CSNK2A1 Foundation on her thesis project: developing a Disease Concept Model for Okur-Chung Neurodevelopmental Syndrome.
This project represents the largest symptom characterization effort to date in OCNDS. Through this work, Grace helped document the lived experiences of individuals with OCNDS and their families, including more than 70 newly reported symptoms.
Her work is important for families, clinicians, researchers, and future therapy development. It helps validate symptoms families have reported for years, supports clinical trial endpoint and outcome measure development, and may help clinicians better recognize, monitor, and treat symptoms that could otherwise go unaddressed.
Grace also presented this work at our conference last summer and shared a poster with the OCNDS community. She approached the project with thoughtfulness, compassion, and a deep respect for the families whose experiences shaped the model. Stay tuned as we hope her findings are published soon!
Grace, thank you for your dedication, your care, and your meaningful contributions to the CSNK2A1 Foundation. We are so grateful for the time and heart you gave to this work, and we cannot wait to see the impact you continue to make as a genetic counselor!
2026 Scientific Advisory Board Member of the Year
We are honored to recognize Vanessa Vogel-Farley as our 2026 Scientific Advisory Board Member of the Year!
Vanessa brings a rare and powerful combination of scientific knowledge, nonprofit leadership, research operations experience, and deep commitment to patient advocacy. She understands the importance of strong science, thoughtful strategy, and making sure the patient voice is central to research, drug development, clinical trial design, and quality of life decisions.
Over the past year, Vanessa has contributed in so many meaningful ways. She attended our conference and provided thoughtful live feedback, reviewed grant applications, participated in interviews for new Foundation roles, helped us think through research priorities, and connected us with new collaborators and opportunities.
What makes Vanessa such an extraordinary advisor is not only what she knows, but how she shares it. Her guidance is thoughtful, practical, and always grounded in what will help move the field forward for families affected by Okur-Chung Neurodevelopmental Syndrome.
Vanessa, thank you for your leadership, generosity, and commitment to our mission. We are so grateful for the time, expertise, and heart you bring to the CSNK2A1 Foundation.
2026 Community Member of the Year
We are honored to recognize Edouard Corvain as our 2026 Community Member of the Year!
When Edouard's family received an OCNDS diagnosis, he and his wife immediately asked, "How can we help?"
Despite balancing full-time careers and preparing to welcome their third child, they stepped forward to build a stronger community for other families. As our Regional Ambassador for France, Edouard has welcomed newly diagnosed families, organized in- person gatherings, championed research participation, and helped make tax-deductible giving possible for families in France.
His leadership has helped France become one of the most engaged OCNDS communities in the world, with nearly every known French family participating in Simons Searchlight. He also played a key role in helping enroll families into our motor phenotype research study, ensuring their experiences will help shape the future of OCNDS research.
Edouard leads by example. He quietly brings people together, encourages others to get involved, and reminds us that one person can make an extraordinary difference.
Edouard, thank you for your leadership, generosity, and commitment to families in France and around the world. We are so grateful for all that you do!