Batten Disease Family Association (BDFA)

Partner description and expertise

BDFA logo

The BDFA is the only UK Charity dedicated to supporting families, raising awareness and funding research into the group of diseases known as the NCLs or Batten Disease. The BDFA was granted Registered Charity status in 2001, UK Charity Number, 1084908. One of the principle founding aims of the Batten Disease Family Association is to ensure that affected children, young adults and families do not feel isolated and are given the tools to be able to continue to live life and reach their maximum potential. The BDFA has over a decade’s experience in identifying & responding to the needs of patients and families, in the UK, direct support and advocacy for patients, providing best practice advice & advocacy for education. The BDFA currently provides the support services for patients for the BMN190 clinical trial for CLN2 disease in the UK and provides expect advice & collaborates with NCL family organisations and professionals at the other Clinical Trial Centres in Germany, Italy, & the USA. The BDFA has facilitated and funded research into all forms of Batten disease to identify potential therapies and ultimately a cure. Through the provision of a Scientific Officer, a focused programme of symposium sponsorship, combined with attendance as an exhibitor, the BDFA has developed networks between researchers, professional and families. The BDFA has instigated the direct involvement of patient organisations at scientific meetings. The BDFA co-hosted the international NCL2012 conference in London and played a key role in the public engagement strategy. With Dr. Mole & UCL the BDFA designed & facilitated the award winning “Market Place” sessions, which enabled all those present to interact, ask questions and learn from each other. The BDFA is a founder member of the Batten Disease international Alliance (BDIA) and has collaborative partnerships within the EU, and worldwide, with many other non-profit research foundations & NCL family organisations, professional groups and Biotechnology companies to enable us to drive forward an innovative worldwide agenda for Batten disease research.

Role in the BATCure project

As part of the BATCure project, BDFA will lead WP9 in order to develop the resources for patient involvement and preparation in clinical trials. The success of future therapies for NCLs (Batten disease) and any other rare disease requires a multidiscipline approach and collaboration between all stakeholders. The role of BDFA scientific Officer is to develop a new methodology and resources to allow exchange of information to better advise and instruct the researchers in the other WP as to patients’ understanding of current research, enable patients to participate in preclinical work in timely and effective manner for their benefit and to aid the other WP development.

Heather Band is the Scientific Officer for the BDFA. Heather has been responsible for BDFA research strategy and research funding since 2007. She is also part of the EU funded project “JNCL and Education”, working on the development of the survey for patients and providing scientific support. She was a member of the local organising committee for NCL 2012 (London) co-hosted by BDFA. Heather has experience in making science accessible and promoting direct patient involvement in major research projects.

Laura Codd has joined the BDFA as the BATCure Project Administrator. Her background is in the market research industry where she worked on a wide range of qualitative and quantitative research projects both as a Researcher and, more recently, a Project Manager.