Confessions of a Rare Disease Mama
A Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her Son
In this moving episode of Confessions of a Rare Disease Mama, I sit down with Lauren Williams, a rare disease advocate and one of the driving forces behind the CureGRIN Foundation. Lauren shares her journey as a mother to a son who bravely fought against GRIN1, a rare genetic condition, and the heartbreak she has and continues to endure from his passing just over a year ago.
Lauren opens up about how she made the decision to continue to advocate after her son's passing, dedicating her life to supporting other families navigating GRIN1 diagnoses. We discuss the importance of community, the challenges of advocating for rare diseases, and the legacy of love and resilience that her son has inspired.
Trigger Warning: Child loss
Connect with the CUREGRIN Foundation:
- Website: https://curegrin.org/
- Social Media: @curegrin_foundation
Connect with Lauren:
- On facebook: https://www.facebook.com/laurenrochellewilliams/
- Through email: Lauren@curegrin.org
- Join her virtual support group (Unbreakable Bonds) for bereaved parents of medically complex children: https://www.facebook.com/share/g/15XzQPCNTz/
Thank you for listening and holding space for this important discussion.
Resources & Links for this episode:
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