Neurodiversity advocacy and a genetic condition associated with autism. In this conversation, Jacalyn Lee shares her journey into advocacy, driven by her experiences as a mother of a child diagnosed with DEAF1 Associated Neurodevelopmental Disorder (DAND). She discusses the emotional complexities of receiving a diagnosis, the importance of community support, and the establishment of the DAND Alliance to raise awareness and promote research. Jacalyn emphasizes the critical role of genetic testing in understanding neurodevelopmental disorders and offers resources for...
Neurodiversity advocacy and a genetic condition associated with autism. In this conversation, Jacalyn Lee shares her journey into advocacy, driven by her experiences as a mother of a child diagnosed with DEAF1 Associated Neurodevelopmental Disorder (DAND). She discusses the emotional complexities of receiving a diagnosis, the importance of community support, and the establishment of the DAND Alliance to raise awareness and promote research. Jacalyn emphasizes the critical role of genetic testing in understanding neurodevelopmental disorders and offers resources for families navigating similar challenges. The conversation concludes with key takeaways on advocacy, awareness, and the importance of checking in on friends in the neurodivergent community.
Key Takeaways:
- The journey of receiving a diagnosis involves complex grief.
- Community support is vital for families with children who are neurodivergent
- The DAND Alliance aims to raise awareness and promote research.
- Awareness and education can change lives for families.
- Trusting your instincts can be important in advocating for your child.
Jacalyn Lee is a neurodiversity advocate, drawing from her personal journey as a mother to a child with an ultra-rare genetic condition called DEAF1 Associated Neurodevelopmental Disorder (DAND). After her daughter’s DAND diagnosis, Lee became credentialed as a Non-Attorney Special Education Advocate and launched The Atypical Advocate, a Substack newsletter that shares the complexities—and joys!—of raising a neurodivergent child with complex medical needs. Lee currently leads efforts to advance awareness and critical scientific research for DAND through The DAND Alliance, the nonprofit she founded.
Lee believes in the power of storytelling to drive awareness, inclusion, and systemic change. It is through her writing that Lee aims to provide practical resources, community, and emotional support for parents, while fostering greater understanding and empathy for neurodivergent families and their atypical families.
As a speaker, Lee is frequently invited to share insights on creating neuro-affirming communities, speaking with children about autism, navigating the early days of a disability diagnosis, and more. From hospitals and universities to media outlets and The Atypical Advocate, she weaves personal experience with actionable guidance to help families feel less alone and more empowered.
In addition to her advocacy work, Lee has more than 20 years of experience in architecting communications strategy for iconic global and startup brands in the consumer tech, media, ecommerce, and wellness industries, including Equinox Media, The Knot, Care.com, and Gopuff. Her professional background has honed her ability to build meaningful connections and amplify important messages—skills she now channels into her mission to champion neurodiversity.
Jacalyn Lee lives in New York with her husband and three children.
- Learn More About DAND + Donate: www.thedandalliance.org
- Follow The DAND Alliance on Instagram: @thedandalliance
- Read The Atypical Advocate: theatypicaladvocate.substack.com
- Follow The Atypical Advocate on Instagram: @theatypicaladvocate
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Here are more resources related to today’s topic:
- The Atypical Advocate, Jacalyn’s Substack
- The DAND Alliance
- Simons Searchlight
- Findageneticcounselor.org to search for a genetic counselor near you
- Episode 27- Is autism genetic?
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.
