Understanding
Okur-Chung Neurodevelopmental Syndrome
Become a Regional Ambassador
AMBASSADORS OF CONNECTION
Our regional ambassadors are responsible for building a supportive OCNDS community within their assigned region. Regional ambassadors connect with families as they navigate the social and emotional challenges of diagnosis, treatment, and management. They are a liaison between the families and the foundation, identifying issues and challenges that are unique to specific regions. Regional Ambassadors will gather and identify resources that will be helpful for OCNDS families in their region. To build community, regional ambassadors will host a zoom call every 6 months and an informal in-person gathering annually for OCNDS families living within their designated region.
RESPONSIBILITIES
- Point of Contact for your designated region
- Organize & host an annual informal in-person regional gathering
- Organize & host regional zoom call every 6 months
- Gather/identify resources for families in your region
- Educate the foundation on issues and challenges that are unique to the region
COMMITMENT
- This is a 2-year position with an option to renew
- Have time and flexibility in your schedule to connect with families in your region
- One-hour zoom call up to 3 times a year as a regional ambassador group check-in
- One 1.5 hour zoom call with families in your region every 6 -12 months, depending on the region
- Annually plan, organize & host one informal regional gathering with Foundation stipend
- 8 hours of peer support training from the Child Neurology Foundation funded by the CSNK2A1 Foundation (for our English speakers only at this time)
Amber Reynolds (United States - West Coast)
I am Amber Reynolds and I live in Highlands Ranch, Colorado. I love my job as an Elementary PE teacher. My daughter Harper is 11 and has OCNDS. I want to be a regional ambassador because I want to help bring families together, and I want to help new families find resources. I really hope to bring awareness and connection to those with OCNDS and the community. An interesting fact about me is I was on season 10 of the Bachelor. 🌹😆
Email:
amber@csnk2a1foundation.org
Terri Jordan (United States - MidWest)
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
Elisabeth Mellinger (Canada)
I am a mom, accomplished musician, gardener, and passionate advocate for my daughter with OCNDS. Our journey has crisscrossed 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 Regional Ambassador Program, to connect with families faced with this rare diagnosis, and help them through the early stages of diagnosis and resource gathering. I look forward to helping build on our incredible community!
Michelle Proctor-Simms (Canada)
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.
Claire Whitehill (Great Britain)
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 think it is important to have ambassadors representing the foundation in different areas to make local connections with families, to bring people together regionally to make connections, and to share area specific information. I also enjoy running and cooking with my fabulous daughters Beth and Kirsty.
Email:
claire@csnk2a1foundation.org
Monica Bjornslett (Norway)
I live in Troms and Finnmark, Norway. I am a preschool teacher and coach. I have a 9 year old son who was diagnosed with OCNDS at age 7. I want to be a part of the CSNK2A1 Foundation because they are doing so much to help. I want to reach out to everyone who needs help and has questions. I love hiking in the summer and winter, because taking a long hike in the woods and getting fresh air gives me the energy to keep going on.
Email:
monica@csnk2a1foundation.org
Estrella Olmedilla (Spanish-speaking families)
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.
Chantal Van Gellekom (Netherlands)
Hi, my name is Chantal van Gellekom and I live in the city of Hoorn, the Netherlands. Currently, I work as an IT manager at a shared service center of a municipality in the north of the Netherlands. I’m a proud mom of two kids. My daughter Isa (2005) was diagnosed with Okur-Chung Syndrome in February 2017. Ever since that moment I’ve been looking for ways to connect with other parents with children affected by this syndrome. I’m so lucky to have met Jennifer Sills in person twice. We also try to have regular meetings here in the Netherlands and I hope to be able to support the families here. For that reason I started a Dutch Facebook page. Please feel free to reach out to me!
Alyssa Ronco (East Coast)
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
Sulaiman J. Aldhuhoori (United Arab Emirates)
I live in Dibba Al-Hisn, Sharjah, UAE. I am a policeman. I have a 9-year-old daughter who was diagnosed with OCNDS when she was 6 years old. I will respond to any call, whether from an Arabic-speaking organization or family, to make sure that everything the organization offers will be available to them. I want OCNDS children and their families feel supported. Contact me so I can share my knowledge about the Foundation and OCNDS. An interesting fact about me is that I love hiking.
Edouard & Justine Convain (France)
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.
