Alyssa Ronco

I am a native of Pennsylvania, where I live with my daughter Angeli who lives and thrives in spite of her OCNDS diagnosis.  I work as a medical scribe in addition to being a professional opera singer and voice teacher, running my own vocal teaching studio.  In our spare time, we love to go to horse shows, travel, and go on as many adventures as possible!  We love animals and have five dachshunds as well as ponies and miniature horses, which have become one of the most amazing therapies for Angeli!  It was after seven years of searching for an answer to Angeli’s physical and neurodevelopmental struggles that the diagnosis of Okur-Chung Neurodevelopmental Syndrome was discovered, leading us to the CSNK2A1 Foundation.  I want to be a part of supporting families in their journey and helping them feel like they are part of a greater family that we strive to create at the foundation.  Walking the path of a rare disease can be a very lonely one, and I hope that in sharing experiences, we can help each other feel like no one is alone.  It is also important to me to raise awareness for ultra-rare diseases in society and amongst the medical community so that our children may gain as much support and acceptance as possible.