Image: Neale Parke



Annual General Meeting

On Sunday we held our Annual General Meeting on zoom, and it was attended by a record breaking number of Chromosome 18 family from the UK, Netherlands and Germany. Thank you those who were able to join.

As part of the proceedings we elected a new committee and welcomed new trustee Amy Jobling. So the Management Committee is now Richard Davison and Max McGee continuing as Chair and Treasurer, Jade Surrage and Sara Jackson continuing to split the role of Secretary, and Trustees Amy Jobling, Paul Seeman, Sarah Russotti, and Steve Mersereau.

The wonderful Bonnie McKerracher gets to step back into a co-opted position along with our newest volunteer Arina Schmidt who is bringing us a voice from Germany which will join Sarah Russotti’s view from Italy and Agemo.

Finally we have Katharine Newman and Helen Kirkham becoming Observers at our monthly meetings. We’d like to thank Greg Ross-Sampson for the years and time spent.

We’re so happy to have a new mix in our Management Committee and meetings going forwards, because the charity has some decisions to make around our role and structure, prompted by these last few years of not having Conference due to the Pandemic. Since the AGM we have already had some emails with offers of help and telling us what Chromosome 18 Europe means to them, and we welcome anyone getting in touch by emailing Jeni at ch18eurmembership@gmail.com. All emails are passed onto the Trustees.

We want to involve the membership as look to our future, so please watch out for emails when we are ready to ask what you think about suggestions we bring forwards.

Also, we are looking forwards to our 2022 Conference, which will be in Rome at the end of July. We will email you with confirmation of the date just as soon as we can.

With love
Ch18 Europe

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

BonnieBonnie 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.