Elaine Healey
I am proud of the achievements I helped put in place, along with my trustee board, for the Brittle Bone Society throughout my term as Chairman. The BBS has achieved a great deal in the past few years.
Members and supporters have benefited from input from our own Medical Advisory Board launched under my direction in 2012. The Board is keen to complete Clinical Care Guidelines/Care Pathways for both children and adults, ensuring no matter where in the country, medics can access an approved guidebook on the correct procedures, treatment, and care.
With our admission to the AMRC (Association of Medical Research Charities) in Nov 2016, we successfully launched our own Research Strategy and first international Scientific Symposium in February 2017. We awarded our first significant grant awards to two research programmes in 2018 and we are excited to see our research plans grow.
We continue to strive towards full NHS adult services, and a commitment to work in pursuit of greater prospects for treatments that our community needs.
We hosted 8 annual VOICE meetings for 16-30-year-olds and this remains under review to renew and refresh this dynamic project which focusses on independent living.Cool Bones for our younger 11-15-year-olds is also being reviewed. This is a space for youngsters to share their challenges and enjoy learning from their peers.
Various Family Fun Day events (formerly called hospital patient day events) proved popular, taking our mini-conference events across the country – initially seen as a way to bring the value of our annual conference on a smaller scale all over the country. A difficult challenge for our small staff team.
Kids packs are routinely going into hospital wards for our youngest children to brighten up their days and let them know there is a force for good out there, the Brittle Bone Society – concerned and interested in their well being.
Our Society has been offering a valuable contribution to national NHS policy in the UK Rare Disease Plan and beyond. Our advocacy is ongoing.
We are reaching out and building bridges with other rare bone groups.
Communicating regularly with our members and supporters, offering vital support and assistance through our excellent film catalogue, renewed website and Facebook, Twitter, e-zines and newsletters.
We continue to fundraise for thousands of pounds year on year towards vital wheelchairs and equipment – to part fund and host meaningful events, to raise awareness and bring our members together to share.
I am confident we achieved all that we planned, the current Strategic Plan (launched January 2022) shall see us call for and provide yet more for those we were set up to support.