Bringing our families together in Birmingham for a second time!
It was a wonderful chance to catch up with some of our families from last year, and to meet some fantastic new families; many of whom were able to come together at the Edgbaston Hotel in Birmingham to spend time getting to know one another for the evening and to spend a social breakfast together.
Once again, everyone was brought together at the Calthorpe Academy and given access to a team of volunteer carers and various activities for their children.
We were extremely lucky to welcome back a very knowledgeable paediatrician Dr. Saikat Santra. We also welcomed back the wonderful Dr. Hettema, and two more amazing UK scientists, Dr. Michael Schrader and Prof. Alison Baker. We can’t thank them enough for not only giving up their time to give four incredible presentations on peroxisomal disorders and the peroxisome, but for taking the time to socialise with our families and answer questions.
After a lunch together, families were able to enjoy use of the hydrotherapy pool and music therapy in the quiet room. Parents who’ve sadly lost their precious children to ZSD were able to attend a grief counselling session with Pat, our kind volunteer from Cruse, before gathering together for a wind down session where those leaving were able to say their goodbyes.
We then convened back at the hotel for a social evening with our three scientists and those families and volunteers who were able to stay another night, making use of a private function room at the hotel. This was a really lovely space to spend some time let our hair down, enjoy the music and each other’s company while the children were able to play and let off some steam. It was a wonderful time for families to connect and socialise with each other and the very people who a working so hard in their research into the peroxisome; something that offers families a glimmer of hope for the future. Such wonderful personable down to earth people. I know our families were extremely grateful for their time.
We were allowed to have a relaxed and social breakfast in the same function room the next morning before saying our goodbyes (with extremely heavy hearts!)
For more pictures from our family day, please go to our Zellweger UK Flickr page.
Photography courtesy of Simon Hawkins.
We’d like to thank
Andy who kindly offered free use of the Calthorpe Academy facilities.
Dr. Saikat Santra, Dr. Ewald Hettema, Dr. Michael Schrader and Professor Alison Baker for travelling and giving their time for free to come to meet and speak to our families and for their incredibly informative presentations.
Our team of volunteers who also travelled and gave up their time for free to support and entertain our beautiful children.
Gill from Sense who once again came to support families.
Pat from Cruse who again offered her services for free and gave another wonderful counselling.
Our fabulous music therapists who also returned to offer lovely music therapy for our families.
Our very own Carly, who put a huge amount of her time and effort into organising the social evening and hotel so that our families could spend some quality time in each other’s company, learning from each other and building a wonderful support network.
Everyone at the Edgbaston Palace Hotel who went out of their way to make sure everyone had the space and comfort to socialise. They couldn’t have made our stay any better.
And to Simon Hawkins, for capturing the entire stay so beautifully.
Last but certainly not least we’d like to give a huge thank you to Michelle for putting so much time, effort and organisation into making the day everything it was. We owe you so much; you have paved the way and set a fabulous format for future meet ups. Thank you so very much.
Michelle now hands the baton over to Stephanie who has kindly offered to organise our 2017 family meet up which will be happening on the 19th August, 2017 at the Cricket Green School in London. Exciting stuff; we can’t wait!