History of Chromosome 22 Central
History of C22C
Chromosome 22 Central came to life about the same time as the Internet was developing, around 1996. Stephanie, founder of C22C, gave birth to a little girl named Maia, in 1995. Maia was born with many medical and physical issues and after a three months stay in the NICU, was diagnosed with what is now called Emanuel syndrome. Stephanie found out she carried a balanced translocation between chromosomes 11 and 22. Stephanie found 17 other families within about a year or so after Maia was born, who had children with the same disorder, and decided to start a basic web page to look for others. Over the years, 55 newsletters were sent out by regular mail (pre-social media!) to connect families.
In 1996, Stephanie and Maia were featured on an episode of the PBS show Life on the Internet: Searching for a Cure, where researchers were using the internet to work on DNA sequencing and parents were starting to look for others who had children with rare disorders.
People from all over the world began to email and call who had children with many different chromosome 22 disorders. The small parent network supporting children with the unbalanced 11;22 translocation (now called Emanuel syndrome) evolved into Chromosome 22 Central.
Original Logo which was updated in 2021 for our 25th anniversary
Chromosome 22 Central connects families in over 45 countries with children with any chromosome 22 condition, through our social media platforms.
Some accomplishments include:
- Advocating for the name Emanuel syndrome to be adopted in the medical literature and having the disorder entered in OMIM and GeneReviews.
- Prompting research on Emanuel syndrome and being involved in one of the largest studies published in 2009.
- Publishing 55 family newsletters between 1996 and 2014 before moving solely to social media.
- Holding multiple family conferences in Canada and the US, including as one of 6 co-host groups for the World Congress of Chromosome Abnormalities in 2004.
- Celebrating our 25th anniversary in 2021 with an online webinar series.
- Collecting stories and tips from members to create the book Raising the Goddess of Spring: A guide for families raising children with rare chromosome disorders, published in 2021 as a support for families with all proceeds supporting group activities.
As our ability to support families online has grown, we have changed along with the times. We continue to educate and support families and people affected with chromosome 22 disorders, and bring awareness to their conditions. We continue to try to change to meet the needs of our members and always appreciate feedback and suggestions from the people we support.