OCNDS REGIONAL AMBASSADOR PROGRAM 

My son is 21 years old but received the diagnosis at age 16. I want to be a regional ambassador to assist other families so they do not feel like a deer caught in the headlights, not sure which way to turn. Getting a diagnosis later in life meant dealing with the different symptoms and finding therapies that would help my son grow. I am always looking for ideas and activities that can be implemented to expand the therapy experience to keep my child growing on his path toward independence. Getting the diagnosis later in life also meant becoming an advocate for my child and his possibilities. I am looking forward to sharing this knowledge with new parents.

I have been a small business owner in St. Louis, MO for 20 years. They say, “Necessity is the mother of invention.” I wanted my child to be able to help cook and I want him to work. After lots of research, I just recently launched a second business called The Color-Coded Chef to help my child and others toward that goal.

Email: terri@csnk2a1foundation.org

I live in Hammonds Plains (near Halifax), Nova Scotia, Canada, where I am the Director of a provincial government agency. My daughter, Claire, was diagnosed with OCNDS in 2018. I want to be a regional ambassador because the CSNK2A1 Foundation is a lifeline!  It has helped me understand my daughter's diagnosis and connected me to a global community of support.  As a member of the Parent Advisory Board (PAB), I am learning about the needs of our community including the need for connection and support (e.g., such as identifying resources and services). I’m so grateful for the support and friendships I have made through the PAB and Foundation.  I want to give back by helping foster a sense of community and connection with others affected by OCNDS.  An interesting fact about me is my way to wind down & relax is doing word puzzles, sudokus, and reading – at any given time, I am reading at least one book.

Email: michelle@csnk2a1foundation.org

I am a native New Englander and I made my way to Austria in my early twenties, seeking adventure and an immersive way to develop my German skills. Along the way I fell in love and now have 3 beautiful boys. Our second son, Robin, was diagnosed with OCNDS shortly before he turned 2 years old and the experience has driven me to advocacy and providing support for children and families with this rare diagnosis.

Being a regional ambassador means for me that I will have the opportunity to help families who are also affected by OCNDS. I want to be a part of building a better future for anyone who receives this diagnosis and creating a community of support so that anyone with OCNDS may thrive despite having a disability. My family has been fortunate to receive our diagnosis relatively quickly and at a young age, which means we will gain many experiences for this specific disorder. I also feel fortunate that I have a strong connection to the US as well as German-speaking countries; therefore, I aim to play a large role in making sure that all the foundation has to offer will also be accessible for people who live in German-speaking countries.

Email: kristen@csnk2a1foundation.org

For me, being a regional ambassador is being able to make sense of the disease we live with every day. We are looking for the therapies that are best suited to advance our learning, development and medical processes, trying to improve my daughter's quality of life. It is important for me to be able to help other families, to give support so they do not feel alone in this diagnosis. May our mistakes and lessons serve other families.

Email: estrella@csnk2a1foundation.org

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.  I look forward to supporting and creating community in my region!

Email: alyssa@csnk2a1foundation.org

I live with my wife Justine near Paris, France. We have two wonderful boys and another one coming soon. Oscar is our oldest boy, he is 5 years old and was diagnosed OCNDS when he was 2. When we got in touch with the foundation, we were connected with a French-speaking group; we felt so grateful to have the chance to share experiences about our children and tips about health issues they are facing and how to help them in their development. That's why Justine and I want to be more involved as regional ambassadors: to have the opportunity to meet, talk with, and welcome new families with the helpful support and resources of the foundation. I am a risk and crisis manager in an insurance company, and I like to run long-distance trails in the mountains to disconnect from my busy life. Justine is a communications director in an international law firm. She loves practicing yoga, hiking, escaping into nature from the city, and traveling on new adventures.

Email: edouard@csnk2a1foundation.org