A story by Brittle Bone Society
Our project enabled 5 Scottish children, who have OI (Osteogenesis Imperfecta) , to attend our Family Weekend Conference, by covering the travel and accommodation costs for them and their family carers. The event was held in London in August 2014.
What Family Weekend did
Our Family Weekend Conference took place from August 22nd-24th in the Park Inn Hotel, Heathrow Airport, London. The registration form was available for our members from April 2014. We promoted the grants available to Scottish families with OI, through our newsletter, our website and Social media and in particular on our Scottish Support Group Facebook Group.
In addition we directly emailed many Scottish families. 5 Scottish families applied for a grant to enable them to attend the event - 3 of whom had never been to a BBS Conference before. The amount of grant was determined by a points system taking into account whether they had attended before, how far they had to travel and any special circumstance .They all paid 25% of the total cost themselves.
The weekend was attended by 170 people from all over the UK, Republic of Ireland and Europe. As part of the weekend event, alongside the main conference, we held a Cool Bones mini conference for young people aged 11-15 who either have OI or have a sibling with OI. There was also a crèche for children aged 0-10 years.
Carers were able to attend many presentations by the 10 leading healthcare professionals who were there and take part in a Rare Bone Question Time. There was an opportunity to learn about BBS Volunteer Support Groups which meet throughout the year, and RUDY a new research project which aims to transform clinical care for participants through patient driven research. Many people with OI are now taking part in RUDY.
There was a Therapy Resource Stand manned by a Occupational Therapists and three staffed wheelchair manufacturers stands . There were many opportunities for the families to network and get to know an chat to other families including the informal Pub Quiz on the Friday evening and the Gala Dinner and disco on the Saturday evening. The whole event provided an opportunity for the children with OI and their families to relax.
What Brittle Bone Society has learned
The five families who benefited from the grants have told us that they would not have been able to afford to come to Conference without the grant they received - the grants we were able to award have been vital to the work we do in Scotland
We knew that we had to ensure all our Scottish members knew about the grants, we made full use of Social media and we directly contacted people who we thought were otherwise unlikely to initially ask for help.
It is often very difficult for people with OI to travel long distances. However as our Conference was held at Heathrow Airport, families who were able to fly enjoyed a much shorter travelling time. This meant they were less fatigued when they arrived and more able to enjoy and take an active part in the weekend.
Our 2016 Conference will be held at a hotel at Manchester Airport .