We did it!! We have held our first ever family conference just as we envisaged a few years ago when we were applying for charitable status.
Back at the beginning of 2016, we kicked off the start of our UK charity with a Crowdfunding Campaign to help raise funds for our very first family conference as well as more research into drug repurposing. In order to achieve this, we partnered with Findacure, who helped us on our way. We are immensely grateful to Rick and all the team at Findacure who helped us towards reaching our dream and we look forward to collaborating with them again in the future.
What we hoped to achieve with the conference was a weekend that was accessible for everyone, so that needed to be financial as well as location, which is not easy. We found the most amazing location which sits between Leicester and Northampton.
Hothorpe Hall was everything we wanted and more, we had the whole venue to ourselves and it was like staying in a stately home for the weekend. We really wanted the weekend to be a social time as well as partly educational and sharing ideas, and we believe we achieved this.
There is nothing quite like being in the same place as others who just understand each other, even though they may never have met before.
Everyone arrived throughout the evening on Friday and started mingling and investigating our beautiful surroundings. We were so very lucky with the weather for the whole weekend.
On Saturday we dropped our children with the play specialists who had been organised, All Events Childcare, and then we headed into our conference room for the day. The children had a great time with Sarah and her team of ladies playing games. The rest of us had a full programme of speakers from various medical professionals and school staff.
We had an ‘Ask the Doctors’ slot which we clearly need a whole day set aside for in the future. We have some fantastic and passionate doctors in our country looking after our children, we are very lucky. We learned about genetics from the wonderful Professor Sian Ellard and had a fascinating neurology presentation by Dr Ram Kumar.
We heard from a young lady who has lived with CHI/diabetes herself and her experiences throughout her schooling and now at A level stage and how, with planning, she is reaching for her own goal to become a doctor.
Two local schools whom have both looked after a child with CHI came along and told us what they put in place to ensure that this young child could attend school. There are many ways to do this and these two schools shared their processes which worked really well for the local family and hopefully gave others ideas to take back to their own schools.
Another highlight was our children's panel where the parents and medical professionals in the room could ask a panel of five children any question they like about living and dealing with CHI. Hopefully we all picked up some tips on how to look after our children better and a tiny insight into what it is like to live with a chronic condition.
A small group of parents and teens got together on Sunday morning and organised a treasure hunt and lots of young children (and ‘old’ children) skipped off into the extensive gardens to find chocolates, many many chocolates!! Huge thank you to Steph and Tom for the wonderful array of chocolates.
Thank you to everyone who made this weekend what is was, from the youngest child to the oldest grandparent.
“I really enjoyed going to the HI conference and learning more about my little sister’s condition. It gave me the confidence to do a piece about CHI for my GCSE English speaking assessment.“ (Taylie Lovitt)
“This was a great conference. Thank you for putting it together and well done, we’d love to attend the future events. It would be great to have longer Q&A sessions in particular with consultants and nurses, maybe consider a specialist dietician and a few case studies could be helpful”
“The whole children’s panel was very educative for us as parents”
“Fantastic child care”
“The venue was excellent, loads of different space for different things.”
“It was nice to meet and share other people’s experiences to give us hope for the future”
“It was superb in terms of the sessions and speakers”
There are so many people to thank individually We would like to thank the following people, groups and companies, all of whom played a part, big and small in making our conference what it was :
Hall and Woodlands https://www.hothorpe.co.uk/All
Events Childcare http://www.alleventschildcare.co.uk/Claire
Persimmon Homes https://www.persimmonhomes.com/
Frances Photography http://www.clairefrancesphotography.co.uk/
|Event End Date||01-07-2018|
|Registration Start Date||23-02-2018|
|Cut off date||15-06-2018|