On AADC Awareness Day, every story matters
My experience shows me that storytelling is a powerful tool
Each year, AADC Awareness Day brings together families, advocates, researchers, and supporters from around the globe. It’s more than just a date on the calendar (this; it’s a reminder of the strength of our community and the importance of sharing our voices.
We invite everyone to join the AADC Family Network online on Thursday as we unite to raise awareness for aromatic l-amino acid decarboxylase (AADC) deficiency, highlight recent research breakthroughs, and celebrate the families who continue to inspire progress.
AADC deficiency is an ultra-rare genetic disorder that affects the brain’s ability to produce essential neurotransmitters. For families living with this condition, the journey can be filled with uncertainty, challenges, and isolation. Awareness day allows us to connect, educate, and amplify the voices of those who live this journey every day. Through these connections, we remind the world and ourselves that we are not alone.
From quiet participant to community advocate
Since 2019, my wife, Judy, our daughter Rylae-Ann, and I have been deeply involved in AADC awareness and advocacy. Our journey began with confusion and fear as we tried to navigate what AADC deficiency meant for our daughter’s future. Over time, we discovered that sharing our experiences could help others find hope.
I still remember the first official AADC Awareness Day event in 2020. At that time, I attended quietly, listening from behind the screen, unsure about how to express the whirlwind of emotions that came with our family’s experience. But something changed that day. I realized that every story, no matter how personal or imperfect, had the power to educate, connect, and heal. By the next year, I went from being a quiet audience member to a presenter, sharing our family’s journey and what we had learned along the way.
That experience transformed how I saw advocacy. It showed me that each voice matters, and that storytelling is one of the most powerful tools we have to bring awareness and inspire action.
Building a global network of change makers
One of the greatest challenges in the AADC community is how scattered we are. We live in different countries, speak different languages, and come from unique cultures. Time zones often separate us, making it difficult to meet or connect. Yet despite these barriers, our shared experiences and determination unite us.
Richard E. Poulin III and his wife, Judy Wei, attend a recent symposium on AADC deficiency. (Courtesy of Richard E. Poulin III)
This is why it is essential to nurture as many leaders, storytellers, and advocates among us as possible. Awareness grows when we all take part, when families host local events, share their stories online, and connect with new parents who are searching for answers. Together, we create a network of hope that reaches far beyond borders.
Our family’s mission has always been to empower others to speak up and take part in shaping the future of this community. We want to see more parents presenting, more young adults sharing their experiences, and more researchers and medical professionals joining hands with families to build understanding and drive innovation.
What to expect this awareness day
This year’s AADC Awareness Day event will be hosted online, making it accessible to everyone, no matter where they live. The program will feature updates on the latest advancements in treatment and research, along with inspiring personal stories from community members around the world. It is a chance to see how far we have come and to look forward to the next steps together.
We invite you to join us Oct. 23 for a day of learning, connection, and inspiration. Whether you are a parent, a healthcare professional, a researcher, or simply someone who cares about rare diseases, your presence matters.
Together, let us celebrate the progress we have made, honor the families who continue to lead with courage, and keep building a future where every person with AADC deficiency can thrive.
Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.
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