Let me introduce myself for those of you that don’t know me. My name is Neale Parker and I am the CEO here at The Chromosome 18 Registry & Research Society and have had the pleasure of serving our families for nearly 7 years in this position. We have all been through a lot over the last few years and as we begin to emerge from the Global Pandemic with our in person events getting back to normal. Its a joy to see so many of you in person for that in person contact that we have craved and missed so much.
As we come up to the end of the year I think it’s worth remembering so many new inititives that have started in 2022. The year started off with our member survey results being released, new series
of Meet our Family video’s being available on our website, new
blogs started, Instagram reels being focused on, being back in person for Conference, Starfish Soiree as part of the golf tournament plus of course initiated the new
World Chromosome 18 Day in December.
This is of course on top of normal social media, newsletters, Facebook live presentations, grant applications and reaching out to every new family that joined.
That is a lot in one year on top of all the day to day running of an organization and wanted to take this chance to recognize our wonderful staff that give so much to the organization in so many different ways.
With a small team of 4 full time staff and a handful of work experience students, I am constantly delighted at the high quality of materials produced, messages communicated, and logistics completed. Having a great team to work with makes the future plans so much more a reality. Lots to be proud of as we reach year end and is setting us up to build even more for 2023.
To keep moving forward our volunteer Board of Directors has spent considerable time and effort formulating a Strategic Plan that looks to develop specific matrix that will keep the organization focused on the needs of our Chromosome 18 families, ensuring the financial security of the organization and ensuring that the Chromosome 18 Clinical Research Center is funded to be able to continue it’s 31 years of ground breaking research.
None of this could be done without you our amazing families, supporters and volunteers! So much is done with your help to help these wonderful experiences for our families, and we have so many individuals that help us in so many different ways, I can begin to Thank everybody. It takes a village, and our village now has over 4,000 members in the USA and 2,000 around the World. With over 190 new members in 2022 our village keeps growing and for the many friends that people have found it’s wonderful to see this network support and nurture so many lifelong friendships.
