MEET OUR INAUGURAL PARENT ADVISORY BOARD
Our Parent Advisory Board advises our Board of Directors, brainstorms ideas and shares insights from the parent perspective related to OCNDS.
- 1 year commitment with one year option to extend
- Meeting Virtual Calls - 1 hour per month
- 5 hours a month minimum for PAB projects
Individually, we are one drop. Together, we are an ocean.
I have 4 kids and my youngest, Kirsty, has OCNDS. Her symptoms include Autism, global developmental delay, speech delay, short stature and learning disabilities. We live in Windsor UK. I work in London as an Executive Assistant. I joined the PAB to share experiences with other families and learn from their challenges and successes, in the hope that more OCNDS families will benefit from the experiences contributed by the PAB. I also wanted to bring a British perspective to the discussions about OCNDS. I enjoy running and cooking with my fabulous daughters Beth and Kirsty.
I am so blessed to be the mom of our sweet 9 yr old daughter, Harper, with OCNDS. We live in Houston, Texas and found a diagnosis for Harper in 2016. Harper is nonverbal, but is the happiest girl filled with joy! Harper uses an AAC device to communicate. I am an elementary PE teacher, and I am passionate about helping children live healthy and active lives. Connecting with other OCNDS families has been so amazing and I can’t wait to connect with more. I wanted to be on the PAB to help spread awareness and connectedness to other CSNK2A1 families. I also wanted to help fundraise so we are able to bring more awareness to our foundation.
I am a native New Englander and 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 on the PAB 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.
I am a mom, accomplished musician, gardener and passionate advocate for my daughter with OCNDS. Our journey has criss-crossed from San Francisco, to Southern Ontario and back to Edmonton, Alberta, all the while searching for an answer to our daughter Matilda's developmental challenges. I am excited to be a part of the inaugural parent advisory board, to help all families faced with this rare diagnosis. Our most recent venture and coping strategy involves fostering as many cats and kittens as we can fit into our house until they find FURever homes!
In 2018 after 21 years of searching for answers, my daughter Mia was diagnosed with OCNDS. The day she was diagnosed I found the CSNK2A1 foundation. I was so thankful to have found a community and information about OCNDS. In 2019, almost a year after diagnosis, we travelled to the USA from Australia and met with Dr. Chung and Dr. Okur and Jennifer Sills. I am inspired by their work and am so happy to be able to contribute to the inaugural Parent Advisory Board. I am excited to be on the PAB to help connect and support the OCNDS families worldwide, to share our experiences and to support the foundation in increasing awareness of OCNDS. I believe my experiences of parenting Mia and my professional work as a Maternal & Child Health Nurse following children’s growth and development will help me contribute to the Board achieving its aims. P.S. My coping strategies are Gin and Chocolate!
My son is 19 years old but received the diagnosis at age 16. I wanted to be on this board because I have been the parent that is like a deer caught in the headlights and 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 and 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 for 17 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. In my spare time, I love to sew. Over the years I have created items for special needs children in Ecuador and parents here at home.
Hello, my name is Melanie and I’m a mom of a special young girl named Ava. She has a rare genetic disorder called Okur-Chung Neurodevelopmental syndrome. I’m lucky enough to be on her team and fighting with/for her! Ava has made me realize that I love working in the medical field and with children who have special needs. Our journey has brought me to my current job as an ABA therapist in Massachusetts, working with kids with autism and behavioral issues. I have found my happy place! In my spare time, I love hanging out with my family & 2 dogs, visiting the white mountains in New Hampshire, taking walks and being creative in the kitchen! I want to be on the PAB because I want to help make a difference in these kids/families lives. I want to share our journey and hear about others. I want to meet new families and keep these special connections. I want to share our voices and let them be loud and heard. I want to share support and love, and spread hope. I also want to let families know they are not alone on this journey.
My husband, Scott, and I are proud parents to our son, Matthew, and daughter, Claire. We live in Hammonds Plains (near Halifax), Nova Scotia, Canada. In 2018, Claire was diagnosed with OCNDS after 10 years of searching for answers to explain her symptoms. I’m the director of a provincial government agency championing equitable policies and services for populations at a higher risk of HIV infection. The CSNK2A1 Foundation has been a lifeline for understanding my daughter's diagnosis and connection to a global community of support, advocacy, and research. I am in awe of its accomplishments in such a short period of time. I was drawn to the PAB by a deep desire to "give back" and help other families and individuals affected by OCNDS . My favourite quote: The question should be, is it worth trying to do, not can it be done (Allard Lowenstein).
I live with my family in Albany, New York and my youngest child, Cordelia, has OCNDS. In April 2016, the first paper was published describing OCNDS and Cordelia was one of the first 5 patients identified in the original paper. Following her diagnosis, I started the closed Facebook group to find other parents and patients. While I am trained in healthcare and emergency services, I wear many hats during the day that run the gambit of responsibilities. The most important role to me is helping to shape not only my families’ future but others as well. I want to be a part of PAB to shape a place of growth, kindness, compassion, caring, and understanding. I want to help guide new families through diagnosis and provide new information and research for the benefit of all OCNDS families.
My name is Jillian Kavanagh and I work as a nurse practitioner in Massachusetts. I am a proud mom of two unique and remarkable children, Elle and Jack. My daughter Elle was diagnosed with OCNDS at the age of 3 and has continued to amaze myself and all those in her life.She has taught her little brother Jack how to be kind and how to never give up. In our spare time, our family loves to spend time outside. I spend my “mom time” every morning on my Peloton, which has been a great stress reliever. My goal is to help spread awareness of OCNDS in the medical community as well as be an advocate for families that have recently received a diagnosis of OCNDS.