Parent Advisory Board

MEET OUR 2022-2024 PARENT ADVISORY BOARD

Our Parent Advisory Board advises our Board of Directors, brainstorms ideas and shares insights from the parent perspective related to OCNDS.


Their Commitment:



  • 6 hours of leadership training with outside consultant
  • 1 year commitment with one year option to extend
  • Meeting Virtual Calls - 2 hours per month
  • 5 hours a month minimum for PAB projects

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Claire Whitehill

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.

Kristen Didzoleit

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.

Parent Advisory Board - Elisabeth Mellinger

Elisabeth Mellinger

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!

Terri Jordan

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.

Parent Advisory Board - Terri Jordan
Parent Advisory Board - Michelle Proctor-Simms

Michelle Proctor-Simms

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 strong and informed government and public action on HIV/AIDS in Nova Scotia. 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).

Penelope Gatlin

My husband Chris and I have been married for 20 years and have one child, Rowan. We live in North Carolina, where I work in database design/administration. My degree is in ceramics/sculpture, and I enjoy traveling and seeing art and architecture. February 8, 2019, was the first time we read the words “Okur-Chung Neurodevelopmental Disorder” on a genetic test report and finally had an answer. Prior to this diagnosis, our child had received diagnoses of low muscle tone, global developmental delay, speech delay, selective mutism, and autism. As we grasped the fact that this was an ultra-rare genetic syndrome that was not known prior to 2016 and was only shared by less than a few hundred individuals worldwide, at first, we felt very alone.


However, as the cost of genetic testing decreases, genetic diagnoses are increasing, and we have seen this in real-time as the OCNDS patient community has grown. I am especially passionate about encouraging policies that increase testing for newborns. When my child was born doctors suspected a genetic disorder but genetic testing was not as advanced as today. My hope is that one day, every OCNDS patient out there will be diagnosed at birth, giving their families more information than we had; because knowledge is power. Thanks to the CSNK2A1 Foundation, we no longer feel alone as we are able to connect and share with all the families that have a loved one with OCNDS, and I’m honored to serve on the Parent Advisory Board to help contribute in any way to the Foundation that has given us so much.

Parent Advisory Board - Penelope Gatlin
Parent Advisory Board - Katie Keiser

Katie Keiser

I am the mother of two beautiful children, Dustin and Adreanna. Both have OCNDS along with additional diagnoses, making their cases more complex. We have lived in Delaware for the last 3 years, and before that, we lived in Pennsylvania. After searching for answers for my children for 14 years, we received the OCNDS diagnosis in 2021. The CSNK2A1 Foundation has been so helpful, and right away, I knew I wanted to become involved in helping and supporting not only my children but other families receiving an OCNDS diagnosis as well. By joining the Parent Advisory Board, I also hope to help educate and bring awareness of OCNDS to doctors, therapists, teachers, and others in the community.

Connie Johnson 

Greetings! My name is Connie Johnson. Since I basically grew up here, I consider myself a native of Las Vegas, NV, U.S.A.; however, from 2014-2020 my husband, our four boys, and I lived in Macau, China S.A.R. While working with a developmental pediatrician in Hong Kong, my youngest son, Cam who is 10, was diagnosed with OCNDS through a gene test in 2019. Since the time Cam entered school at age 3, I have been advocating for him to receive the necessary support and accommodations that will help him achieve his unique educational goals and for him to continuously improve. At times this has been a challenge, but through my experiences with him, my education (Bachelor’s-Elementary Education and Master’s-Teaching, Elementary Education with a Special Education endorsement), and professional teaching career, I have been able to collaborate with others to get him the support he needs. I am hoping that all of this experience and knowledge will be useful in supporting other families who have children with OCNDS on their journey, especially with educational aspects. As a member of the PAB, I enthusiastically look forward to meeting other families and working with them to bring about an awareness of OCNDS and to help achieve the goals of the CSNK2A1 Foundation.

Parent Advisory Board - Connie Johnson
Parent Advisory Board - Alyssa Ronco

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.

Jessica Wilfong

Hi! My name is Jessica, and I live in Avon, Indiana, with my husband and two children: Braylon and Maci.  My youngest, Maci, was diagnosed with OCNDS in February 2021, when she was three years old.  I currently work as a Social Worker for an elementary school where I educate, advocate, and support a variety of children with mental health needs.  In my free time (because we all have so much of it!), you can find me at the dirt bike track cheering on my husband and son, at the lake with family, or playing in our pool. I am excited to participate on the Parent Advisory Board to connect with other families around the world.  I hope to help raise awareness and increase acceptance of this journey.  I want to create an uplifting and supportive connection by helping all families share their voices and know they are not alone.

Parent Advisory Board - Jessica Wilfong
Parent Advisory Board - Miranda Finn

Miranda Finn

Hello! I’m Miranda Finn, a resident of Gillette, Wyoming. I am an English professor at a wonderful community college. My and Eric’s toddler son was diagnosed with OCNDS one month before his third birthday. We feel fortunate that he received his diagnosis early on so we can connect him to the resources he needs to live a beautiful life. We are also grateful for his early diagnosis because it answered so many questions that we had about his delayed development. While we can’t peer into the future and see what our son’s life will be like in five years, ten years, etc., thanks to the CSNK2A1 Foundation, we at least have an idea of what the years ahead may hold and what we can do to best help our son. We are also deeply grateful for the community that has welcomed us with open arms and brought considerable comfort on tough days. I was so happy to be asked to serve on the PAB. I am looking forward to sharing the knowledge I have learned with other parents and I will value the opportunity to offer advice on how to best advocate for our children. I am also a deeply empathetic person who wants to help other parents navigate life with this ultra-rare disorder. In my free time, I love to spend time with family and friends, read, visit art museums, go the movies, and cheer on the Ohio State Buckeyes and Cleveland Browns.

Eric Finn

Hello! My name is Eric Finn, and I’m a resident of Gillette, Wyoming. I am an Early Interventionist at The Children’s Development Center of Campbell County and a coach for wrestling and football for the Campbell County School District. My wife, Miranda, and I’s son was diagnosed with OCNDS one month before his third birthday. When our little guy finally got his diagnosis, a whole new chapter opened in our lives. His personality continues to be funny and goofy, and we are so grateful to our local community and the resources they’re able to offer as well as the OCNDS community and the CSNK2A1 Foundation. These organizations have helped us tremendously on our journey. Seeing other families with beautiful children working toward some of the same milestones we are and the openness to share and learn has been an incredible resource for us as well. When I was looking for a career change last year, I was drawn to the same organization that helped us with our son at the start to our journey and now I’m able to work with kids like ours every day. I am grateful for the opportunity to serve on the Parental Advisory Board and share the knowledge I’ve been able to gain through working with children. I also look forward to growing with the organization, too. In my free time, I love to keep up on my comic collection, watch movies and TV with my family, and coach wrestling, football, and track and field locally. I’ll always cheer on The Ohio State Buckeyes, Cleveland Browns, and the Cleveland Guardians.

Parent Advisory Board - Eric Finn

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