Jan Wright, our contract worker in Northern Ireland, has shared this update on what's been happening in Northern Ireland
Hello from Northern Ireland – hope everyone is enjoying the summer - if not always the scarily high temperatures in some places. Hasn’t been that warm here but enough to leave both me and my rescue dog looking forward to some rain – which never far away as anyone who lives here will know!
Anyway since taking on the small piece of contract work [funded for 12 months by The National Lottery Community Fund, although we are currently seeking further funding to maintain and extend our presence going forward] I’ve been continuing to focus on raising awareness and understanding of Fragile X and its related conditions and, in particular with Pete and the Team at HQ, building positive relationships with key voluntary/community, health and social care professionals and locally elected political representatives.
And we’ve had some important ‘wins’ too such as:
Being invited to join the Board of the NI Rare Disease Partnership www.nirdp.org.uk
As a member of this Board, working with colleagues to establish an All-Party Group on Rare Conditions at Stormont
Following up/info sharing with members of the Group to embed understanding of Fragile X and how the syndrome can affect members of the family, of all ages
Meeting with the multidisciplinary team at Belfast City Hospital Regional Genetics Centre re the potential for working together to ensure local people connecting with the team are made aware of the support Fragile X can offer
Connecting with the Sleep Charity About Us - The Sleep Charity, specifically the dedicated project team supporting parents of children with sleep issues due to a genetic condition. [In fact Fragile X has been invited to present at the charity’s forthcoming conference in Birmingham in September.]
Connecting with Fragile X Ireland to share and exchange information and identify opportunities for working together
Helping to build awareness of our work via social media platforms such as Twitter, Facebook etc e.g. by way of attracting new ‘followers’.
We had also hoped to meet up with some local families earlier in the summer but for unforeseen reasons this had to be cancelled at short notice. But we are hoping to rearrange doing so in the none too distant future – so if you might be interested and live in Northern Ireland, do contact me and/or Pete as we’d love to hear from you!
Jan Wright
Contract Worker, Northern Ireland
Fragile X Society