Organization: cureCADASIL Association
On Saturday, June 4, 2016, nineteen people from the CADASIL community came together in northern Colorado to learn about the implications of CADASIL in their families and the importance of joining the cureCADASIL Family Registry (through Patient Crossroads). The majority of attendees said they planned to join the registry and would encourage their family members to do so also. Most participants had never been to an event where CADASIL is the focus, and everyone commented that they learned a lot, and they were glad to meet others who understand how they feel. Attendees included diagnosed patients, at-risk family members (CADASIL is genetic), as well as caregivers and other family members. Most people came from Colorado, but a few traveled from Wyoming and Arizona. Awareness ideas, personal stories, and reasons for hope were shared.
As the organizer of this event, I thought I might be looking for things to talk about toward the end of our scheduled four hours, but in reality we didn’t have enough time together! We hope to reunite in the future. The Colorado event was one of four held in different regions of the US during May and June 2016.
A big thank you goes to Global Genes for the grant funds we received at cureCADASIL to promote our family registry and spread awareness of this rare genetic disease.