A story by Brittle Bone Society
Our project enabled 5 Scottish adults who have OI (Osteogenesis Imperfecta), to attend our Family Weekend Conference with their family carers and children if any.
The event was held in Manchester the weekend of 11th Sep 2015.
What Family Weekend did
Our Family Weekend Conference took place from 11th to 13th September in the Radisson Hotel at Manchester Airport. We promoted the grants available to Scottish Adults with Osteogenesis Imperfecta and carers through our newsletter, ezines, Scottish Support Group Facebook page. We also wrote to Scottish families informing them of the grant.
6 Scottish families applied to attend, however one was unable to attend due to a hospital visit. The grant was determined by a point system taking into account whether they had attended before, how far to travel and any other special circumstances. The weekend was attended by 152 people from all over the UK, Republic of Ireland and Europe.
As part of the weekend we run a mini conference for young people aged 11 to 15 called "Cool Bones", and facilitate a Creche for younger children. Adults were able to attend many presentations by leading healthcare professions (some of which can be viewed on YouTube and were live streamed for the first time), and meet with wheelchair suppliers to gain information. There was plenty time for individuals to talk with peers and have opportunities to have fun and take part in the pub quiz go to the gala ball and disco and watch the kids talent show.
The young man told us "It amazes me that after so many years I still have so much to learn, I've come away from conference with new ideas and ways to keep up with my care and quality of life. The information I gained at conference has been invaluable as was being able to speak with the healthcare professionals. "
This young man also told us that he finds it difficult to speak up in group's, but coming to conference really made him feel like his opinion mattered and he was listened too.
His dad said " being able to talk to other parents who are carers and feeling like you are part of a bigger family is so special".
She has since spoken at schools raising awareness of the condition and given emotional support to others by
Her husband is delighted she is more able to get out and about on her own, and they have also spoken to peers on gaining information for car adaptations.