Image: Neale Parke
Dear Members and friends
Because of the continuing covid 19 crisis, we’ve decided to once again postpone the ‘live’ conference scheduled for July this year. We will instead run an online conference this summer and will be talking to our Ch18 family in the US to see if we can join up in a few events. We hope very much to meet again, safely, in Rome in 2022.
We’ll post more information here and on Facebook when we have more details.
Wishing you any your families health and happiness.
The Management Committee
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.
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. I know that for most school has finished for this term but there are lots of ideas and resources here which could be used to entertain and educate our children over the summer.
The link below takes you to a recording of the webinar which you an watch as many ties as you like.
Below you can download the resources mentioned by both Claire and Paul in the webinar.
COVID – 19 Home Schooling Webinar, 15th July @7:30pmFrom 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-. As Kathryn is now over 40 much of Bonnie’s story is one of discovery about Kathryn’s condition and finding the best medical and schooling options for her at a time when very little information existed about chromosome 18 abnormalities. In addition to telling us her story as a parent Bonnie gives us a brief history of the establishment of the Society the why and how it happened.
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. Sara has been involved with C18 Europe for a very long time contributing in virtually every way since the charity started. In this interview Sara talks about her journey with her son Louis and I am sure that many of you will recognise parts of her journey as you too have been there. I also hope that this story provides help and support to everyone.
Podcast 3 – What it is like to be a sibling – Lexie Davison
We try to provide some information to our members on the 18th of each month and this now includes our podcast. In this episode I am interviewing my daughter Lexie who will be 18 on the 18th Dec and thus it is particularly relevant to this organisation. I ask her what it is like being the brother of Billy who has tetrasomy 18p, what is he like and what has it been like growing up together. It is not uncommon for siblings to feel left out so it is important that they get involved and have their say which is something that we try hard to do at our conference. So if you haven’t been to one of our conferences then I would encourage you to do so as a family and involve all of your children.