Image: Neale Parke
Conference 2022
Hello Chromosome 18 Family
Please find a link to register for our Lifecycle Online Conference which will be held from 9:15-8:45 on Saturday 30th July 2022.
We have organised sessions and videos from Jannine Cody and the Registry, Kate Reynolds teen specialist will be presenting with girl and boy specific sessions on hand, and we have a specialist in 0-9 presenting as well alongside an update on the European research. Every session will be translated and captioned so please do let us know your needs.
We will also have our very popular Self Advocate’s panel with lots of new voices to hear, a session for all the kids to hang out with fun activities, as well as a disco and to finish a parent/carers drop in where we can share a drink and toast our lovely global family.
Please register now by clicking this link https://www.airmeet.com/e/40a559c0-f580-11ec-80c6-d1b97ecfe6fe.
Should you have any problems email ch18eurmembership@gmail.com and we will try to help you (from 18th July onwards, please be patient).
Your small busy Management committee have been working hard to bring you this Lifecycle event on 30th July so please share this message to anyone of our families who isn’t on the FB group – we are so excited to see you there.
Who Are We?
The Chromosome 18 Registry and Research Society (Europe) is a charity set up to bring European families affected by any chromosome 18 abnormalities together to share information and experiences. Our organisation covers all chromosome 18 abnormalities: 18q-, 18p-,Ring 18,Tetrasomy 18p and inversions of chromosome 18.
The charity was founded by an affected woman, her mother and the grandparents of a young boy, all of whom lived near Glasgow. The organisation was registered as a charity in Scotland in 2009 (SC040399). We now have a committee of eight volunteers, all of whom are related to people affected by Chromosome 18 disorders.
Welcome to the Chromosome 18 Registry and Research Society (Europe).
We are affiliated to the Chromosome18 Registry and Research Society based in San Antonio, Texas. Our mission is to help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead happy, healthy and productive lives.
We aim to bring the latest research done by the Chromosome 18 Registry and Research Society in Texas to people affected by all chromosome 18 disorders and their families in Europe. To do this, we run family conferences where affected children and adults, parents, siblings, relatives, friends and professionals get together to laugh, learn and play together.
Podcast 6: Interview with Eve Rushmer
Eve is our first self-advocate on the podcast and in the interview we chat about her life and work. COVID-19 Home Schooling Webinar
This, our first, webinar was a great success and many thanks to Claire Harrison from CALL Scotland and Paul Seeman for their help and providing so much good advice and links to a whole range of resources that will be a great help to all of us trying to give our kids some home schooling. COVID – 19 Home Schooling Webinar, 15th July @7:30pm
From your responses to the questionnaire about how you are coping with COVID-19 the number one request for help was help with home schooling. Therefore we are going to run a webinar on the 15th July @7:30pm about home schooling.Podcast 5: Parent Story from one of our founding members Bonnie McKerracher
Bonnie is one of the founding members of Chromosome 18 Registry and Research Society (Europe) and in this episode she tell us of her story about her daughter Kathryn who is affected by 18q-. Podcast 4- Parent Stories: Sara Jackson
This is the first in our Parent Stories, series where I interview Sara Jackson who is one of the management committee members.