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.
Affordable and Accessible Treatments for JM
Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.
