Jeans for Genes 2016

BBS UK applied to Genetic Disorders UK in the summer of 2015 for a grant under the 2016 Jeans for Genes Programme to fund the BBS UK Information Project: Prepare, Support, Empower.  The aim was to produce three booklets:

My Day at BBS Clinic: a booklet utilising pictograms and photos to enable our younger members to better prepare for their day at clinic.

BBS and Me: an information booklet to be used in an education setting, produced in collaboration with our young people and families to ensure their needs are met and their voices are heard.

Transition Handbook and Workshop(s):  a booklet and workshop aimed at preparing our young people for the transition to adulthood and the transfer to the adult BBS clinics.

We were shortlisted and presented our project to the panel in November 2015 and are delighted to report that J4G have awarded part funding; work has begun on the new ‘education booklet’, we will soon have the transition booklet underway and in 2017 we will seek additional funds to complete the project.

Our thanks go to all the young people and families who have helped with the ‘education booklet’ to date, your support and contribution is invaluable.  Our most grateful thanks also go to all the families who supported Jeans for Genes Day in September 2015, in particular to those who told their story to raise awareness of Bardet-Biedl Syndrome and genetic disorders in general.

Breaking Down Barriers

BBS UK are contracted by NHS England to provide facilitation and support services to the specialised BBS clinics held in London and Birmingham and every year we are required to send a report of the year’s activity, highlighting any issues and including evaluation data collected through the year.  We also have to collect, collate and send Service User Data, which includes the age, gender, location and ethnicity of our patients.  The BBS UK membership and patient group is ethnically diverse, with approximately 58% recording themselves as ‘White British’, so at BBS UK we are keen to ensure that our support services are reaching all aspects of our membership.

To that end, in May 2016 BBS UK applied to take part in a three year project called ‘Breaking Down Barriers’, organised by Alstrom Syndrome UK and funded by the Sylvia Adams Charitable Trust and were delighted to be accepted onto the programme.  Funding, mentoring and workshops will be provided across a three year period to help patient organisations join together to support families that have an increased risk of having children with genetic conditions within diverse backgrounds and who have difficulty accessing mainstream services.

The Sylvia Adams Charitable Trust was set up in 1996 with money left from the sale of Sylvia Adam’s personal collection of antiques, in line with her wishes.  From 1996 to 2015 grants have been given to projects supporting children and young people, those with a disability, those living in poverty or socially excluded.  In 2011 The Sylvia Adams Charitable Trust contributed funding towards Alstrom Syndrome UK’s Asian Mentoring scheme.  This funding enabled ASUK to work within the South Asian communities to develop a greater understanding of their cultures and beliefs, the barriers and challenges they face and to raise awareness of Alstrom Syndrome, a rare autosomal recessive condition causing childhood blindness, hearing loss, heart failure, kidney failure, type 2 diabetes and many associated problems.  The project was a great success which led to The Sylvia Adams’ Charitable Trust committing funds to the Breaking Down Barriers project.

The project will enable BBS UK to develop a greater understanding of and provide greater support to ethnically diverse families and individuals and to facilitate greater access to the specialised BBS Clinics.  It is important to BBS UK that we give all families and individuals informed choices about the importance of ongoing health management and that all of our members feel fully understood and heard, whatever their ethnic background.  

The project runs across a three year period and our Year 1 Action Plan has been accepted:

In the first year BBS UK aims to:

  • Ensure all newsletters contain relevant information for the entire BBS UK membership demographic
  • Ensure all information leaflets are recorded in an appropriate language for South Asian members for the BBS UK  YouTube Channel
  • Plan small gatherings in an appropriate central location to encourage families to meet for mutual support

In years two and three, in addition to the above, BBS UK aims to:

  • Identify a member of  BBS UK to be a point of contact for our Asian families and to attend the BBS UK Clinics in the Birmingham area
  • Organise an information day at a Birmingham hotel for local families and patients
  • Engage an Asian Mentor to provide support alongside BBS UK staff and volunteers at the BBS Clinics

We are very excited to have been accepted onto the Breaking Down Barriers Project and look forward to working with Kerry Leeson-Beevers (ASUK) and the Sylvia Adams Charitable Trust.  We will keep members updated with the project and developments over the coming newsletters, in the meantime if members would like to get involved with the project or would like further information, please contact Tonia Hymers: