In the beginning...
In the late 1990’s a group of parents who had children affected by Batten disease started to correspond and meet, their aims were to; pool resources and fundraise for research into a cure, and to ensure no parent went through their Batten journey alone. They were supported with this by SeeAbility who were commissioning a service for Juvenile Batten Disease.
The first formal meeting took place in Edinburgh in January 1999, and the Batten Disease Family Association was registered as a charity. At this time there was little known about Batten other than there were 4 main types, Infantile, Late infantile, Juvenile, and Adult onset (Kufs).
The BDFA was started by families and has retained its strong parent presence on boards since then.
In these pre internet and social media days, the board met quarterly and looked at various ways to fund raise, in order to support research grants and to raise funds for an annual conference and AGM and to network with other Batten charities. The BDFA was helped enormously by the support from 3 key Clinical Professionals, scientists Sarah Mole and Jon Cooper, and Paediatric Neurologist Ruth Williams, who all attended the annual conferences and helped parents (and are still helping) understand the science, research and treatments around Batten disease.
The BDFA started funding research grants annually, providing many opportunities over the following years for post-grad students and the consumables needed for their work who were working on specific projects on a cellular level to understand more about the different types of Batten disease.
The first few conferences took place at the West of England school (now InFocus) as some parents had links to the school and we could use the dormitories as accommodation during holiday periods. After a few years, board meetings moved to SeeAbility Heather House and then conferences were held in other regions mainly in the south of England, using other schools or university spaces until there were enough funds to use hotel settings.
Other key professionals working with children and young adults with Batten disease also became involved with BDFA, including Seeability at Heather House and an educational professional, who taught many children at Dorton House School and was pivotal in understanding the educational needs of children with Batten disease.
In 2007 the BDFA had secured enough funds for the first part time employee, to take on the organising , focus fundraising and bring together information around Batten disease.
In 2008 the BDFA launched their Orange ‘family folders’, Filofaxes that contained information around Batten disease which were sent out to families registered with us, we continue to send these out to UK families free of charge thanks to donations from a family within the community.
With the support of paid staff, the BDFA began developing a strong presence and contribution to scientific conferences held bi-annually across the world and developed links with the Batten Disease Support and Research Association ( BDSRA) in the USA as well as other Batten Charities globally and took on its first full time CEO in September 2010. With a stronger ability to fundraise this was quickly followed by the posts of research officer and social care officer along with administrator and the first office space in Farnborough.
BDFA today…
Over the years the BDFA has continued to develop and has grown to offer holistic support for families affected by Batten disease through our Family Support and Advocacy service, our Peer Befriending service and our Family Wellbeing service.
Through our Science and Research function, we have developed relationships with pharmaceutical groups and scientists to keep up to date with the latest research, clinical trials and treatments, also fully understand the scientific landscape, so that our families are kept well informed.
Our advocacy work has strengthened and we play a crucial role in influencing policy makers and lobbying government around access to treatments, shaping policy and supporting research into all forms of Batten disease. We have a wider impact on the rare disease sector working with other national organisations to support families with rare diseases and influence work around access to treatments and early diagnosis.
We have strengthened our financial resilience by developing our fundraising function, specifically seeking to diversify our income through Trusts and Foundations to achieve long-term sustainability.
In 2024 the BDFA successfully completed the transition to a Charitable Incorporated Organisation (CIO). As a CIO, the BDFA has a legal status similar to a company and it provides the protection of limited liability for the charity trustees. It therefore takes the BDFA into a safer position and a more sustainable future. This is therefore a significant strategic step as we continue on our strategic pathway to influence policy makers, promote research, advance education and provide effective support for affected families.