DYRK1A Family MeetUp July 30th 2016 We had a successful 1st DYRK1A Family Meetup that was held in Cincinnati Ohio. There were 10 families in attendance with approximately 40 people all together. The weekend of gathering started Friday evening during pizza and social time at the hotel. Saturday morning we Continue reading DYRK1A Family MeetUp 2016
When I think of my daughters 18 year diagnostic odyssey and the well-known saying that is shared in the rare disease community about what physicians are taught; “When you hear hoof beats, think horses, not zebras” thinking horses or zebras didn’t work for us when we heard hoof beats. The Continue reading Not Horses, Not Zebras, A Unicorn?
We are currently using a Facebook Group to connect with other families experiencing the affects of genetic changes that alter the DYRK1A gene. We are a small but growing community that hopes to provide support, information and resources. We hope to spreading awareness of the affects that occur when one Continue reading We have a community, Come join us!