Parenting a child with a rare disease comes with unique challenges—but you don’t have to navigate them alone. Join us for a powerful and practical Town Hall event with Ronda Thorington, MA, LPC, a Licensed Professional Counselor and Parent Coach specializing in supporting families facing medical uncertainty. The evening will include: A Guided Introduction to the Resilient Parent Toolkit. Practical Strategies to manage stress and foster deeper family connections. Actionable Tools for weekly resilience planning, medical appointment prep, and self-care. A Supportive Space to ask questions, share experiences, and find encouragement. If you’re a parent or caregiver seeking practical, compassionate guidance, this Town Hall is for you.

Love Letter to a Grandmother
Dear Mom, The past two years have been like none I could have imagined. When CeCe was diagnosed with JDM and her life as a