News

Spring BDFA Newsletter now available

14/02/2012
The newest BDFA Spring Newsletter and Batten Bulletin are now available. Please pass these on to anyone you think might help support our work or if you would like some hard copies please let us kno...

Support the BDFA going forward and become a member

17/01/2012
The BDFA is asking for your support to achieve our Vision for the future by becoming a member. Registered as a member you will be helping support families, professionals and facilitating research i...

Kyran Richmond Fundraising supports the BDFA

16/01/2012
When Kyran was 6 years old he was diagnosed with Retinitis Pigmentosa which is an eye disease in which there is damage to the retina. The retina is the layer of tissue at the back of the inner eye t...

Seeability interview with BDFA Trustee Heather Sicklemore

12/01/2012
BDFA Trustee Heather Sicklemore describes her family's story of her son Guy and their journey with Juvenile Batten Disease

BDFA Fundraising Officer and Family Support Officer Recruitment

04/01/2012
The BDFA is looking to recruitment two new members to their team: Fundraising Officer (25 hours per week) : Advert, Person Specification and Job Description, Application Form, Monitoring Form....

New information service launched to help parents give medicines to their children with confidence

03/01/2012
A new website and expanding information service for parents called Medicines for Children http://www.medicinesforchildren.org.uk/ is launched to help any parent who has ever been anxious when faced...

Christmas Arrangements at the BDFA

15/12/2011
The BDFA offices will be closed from the 21st of December to the 3rd January. Emails and messages left over this time will be responded to when the office re-opens. Our Family Support Officer, S...

Marking NCL research progress through scientific reporting: Danielle Kerkovich, Principal Scientist, Beyond Batten Disease Foundation

12/12/2011
It has been a banner year in Neuronal Ceroid Lipofuscinosis (NCL) research. Clinician scientists and investigators have traveled the globe presenting their findings at scientific meetings and invita...

Ellen Bletsoe, Mother of Laura and BDFA Trustee speaks at Fundraising Dinner

01/12/2011
On the 29th November a fundraising dinner for the BDFA was held at Embankment Gardens in London. Ellen Bletsoe who is the mother of Laura, who has JNCL, and who has made a huge committment to fundr...

BDFA

Main Navigation

Main menu

News Archive