We walked into the 1st CSNK2A1 Foundation Family Conference as strangers and we finished the weekend as lifelong friends. We now have friends (more like new family) that we can call on at anytime who will understand our excitement when our child hits a milestone, or will understand when its been a tough day with challenging behaviors, or will understand the feeling of fear when thinking about the future or just understands what it is like to have a child that has a rare genetic disorder. We departed stronger than we were when we arrived. We left each other more hopeful. We left the conference armed with more knowledge about this new syndrome so we can be better advocates for our children. And as we hugged goodbye smiling with tears streaming down our face, we made plans to see each other in the near future.
TOGETHER we are going to build a better world for our kids.
TOGETHER we are going to unlock the mysteries of OCNDS and discover a treatment that will provide a meaningful change for our community.
Off to plan our next conference!