The Trustees of Corpal have been discussing for some time, how to make our annual event - which we traditionally hold alongside the formal AGM in May – bigger and better for families. For various reasons, only a relatively small number of families attend the AGM events (around 28 each year) and some who used to attend, have stopped attending. }
Some thoughts on why this is the case include:
- Numbers are biased towards newly diagnosed families
- The format and location of the event – between 9am and 4pm on a Saturday – can make it difficult for those who live a distance from the regular venue at Heathrow to attend
- It can be a challenge to find a range of specialists in the field to present and stay on for more informal discussions.
- There is limited time for families to network and find others experiencing similar issues
- We are not appealing to ‘high functioning’ children and adults
- Families and individuals are getting what they need from social media connections and may see less value in meeting face-to-face. In seeking to address all or most of these, the issues we face are:
- Finding a suitable alternative venue(s) to cater for more than our usual 60 or so group size
- Arranging a varied cohort of speakers
- Providing more time for social interaction between families
- Moving the event around the UK subject to numbers in any given area
- Funding the event
- Establishing a regular [or reliable] group of volunteers ?
- Making this event every two years?
In order to action these points, we need to YOUR HELP/SUPPORT to secure the following to make this happen:
A two-day event venue with accommodation - (We have a few in mind, but suggestions welome)
- A varied group of experts and speakers
- Commitment from enough families to have a group size of around 200
- Commitment from families to pay a reasonable amount towards the venue, catering and children’s entertainment costs
The Trustees believe we can attract world-leading researchers on a range of topics – including the pivotal area of genetics research – to present and be available for questions.
It is the commitment and support from families that we now need. We would love to hear your thoughts on this. Please share your views with us by:
- Corpal’s Facebook group page
Just to remind you, what we want to know is:
Do you like the idea of a two-day conference as proposed?
Are you and your family likely to attend?
- How much are you prepared to pay as a family for the event itself, excluding travel and accommodation costs? (Some meals will be provided).
Please also remember that international speakers may require their travel costs paid for unless they are already attending a UK or European event at that time. Corpal is a not-for-profit support group and charity and we are not NHS funded. We are unable to reclaim VAT on purchases.
Please send us your opinion. We want to make this work for our members and all those affected by Acc and Aicardi Syndrome.
To be able to run a conference in 2020, we are counting on replies etc by the 28th February 2019 to make a decision if we can go forward. We would love to hear from you whether for or against.
Any suggestions welcome.