C18 Europe

Eve is our first self-advocate on the podcast and in the interview we chat about her life and work.  This is a remarkable story of resilience and determination to succeed at school, learn to drive and get a good job. On top of that Eve has completed a number of daring and demanding activities to raise money for Chromosome 18 Europe which of course were extremely grateful. I am sure that you will enjoy our chat.

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.

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.

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.

This podcast is the audio version of our second webinar which was a bedtime story "Meet the Genies" read by the author, our very own Sara Jackson. Watch the webinar here: https://cycling-science.webinarninja.com/live-webinars/478065/register?in_tok=f3ab941c-6d80-426d-bfdb-4cec340b6655 [https://cycling-science.webinarninja.com/live-webinars/478065/register?in_tok=f3ab941c-6d80-426d-bfdb-4cec340b6655&fbclid=IwAR3YkwAzIGPUVFGzng48JyA5_nnf0lvD-s54e9FmMxOp4luq-ubOg_awkI4]