As we gear up for Summer Adrenal Camp Week at the beautiful Painted Turtle Camp in Lake Hughes, here are some thoughts on the importance of medical camp for children with CAH: Building a Supportive Community – Peer-to-peer support can be empowering and normalizing for children with a lifelong condition. Developing strong friendships can build … Continue reading Summer Camp: Empowering Kids with Adrenal Insufficiency

It seemed impossible for an emergency rescue medication needed by all patients with Adrenal Insufficiency to go into shortage. Enter: Natural Disaster! A tornado hits the only Act-o-vial factory in the U.S. We experience a full-out national shortage of Act-o-vial for nearly a year. What lessons can we take from the great Act-o-vial Shortage of … Continue reading Lessons from the Act-o-vial Shortage of 2023

We had our first Back To School support group meeting on Zoom in August 2022. Our center discussed the CAH-specific 504 Plan and IEP templates that list accommodations that we regard as useful for students with CAH. We have been encouraging parents to consider requesting a 504 Plan to be created at their school.

We are excited to start up our newest CAH Support Group for Spanish-speaking parents. In LA we serve a patient population that is 60-70% Hispanic. Parents can be bilingual or monolingual, Spanish-speakers. Families can be faced with challenges that range from access to education, support events, and culturally-specific factors. Our first event is on Zoom … Continue reading Spanish CAH Support Group