Support groups have been one of the most invaluable resources on this medical journey thus far. At first it was CHASA - The Children's Hemiplegia and Stroke Association, that guided us through the beginning of our journey. It was a simple Yahoo list serve then, but being able to ask questions of other parents and hear their stories was invaluable. We went to two CHASA retreats that were simply incredible. It is/was wonderful to hang out with other parents and children who are going through exactly what you have experienced.
Then when seizures reared their head, we found great resources with the Pediatric Epilepsy Surgery Alliance. We almost went to their retreat last year in Boston but had a scheduling conflict.
When I was diagnosed with Acoustic Neuroma- the Acoustic Neuroma Association was so helpful. I have attend webinars, Zoom support groups, and have spoken to those newly diagnosed through connections mades through this organization.
Now - on to hydrocephalus! I joined their national group and lo and behold, there is a meetup in NYC in February. So happy to be attending with Byron and Bob on Sunday February 23 at the Sugar Factory on 8th avenue.
