“A two minute phone call confirmed what my heart already knew. My beautiful, intelligent, sassy, baby girl had been given the same death sentence as her brother.” Natalie Evans, describes the grief of finding out that her youngest daughter Alice…
“Our children found it heart-breaking, as we all did, but to see them being brave on each visit, not knowing if it was the last, was just so tough.” Liz Brownnutt, auntie to Ellie Mae and Caleb, who died from…
“I knew I loved paediatric ophthalmology but wanted to combine this with retinal surgery so that I could be a part of the new gene therapy revolution.” Ophthalmologist, Robert Henderson, tells of how his medical career path led him to…
“It was then that I was told that Leo, our little boy, our baby, has a life limiting and fatal condition.” Mum, Lara Olivacce tells the story of her 13-year-old son Leo’s diagnosis with CLN3 and the importance of talking…
The BDFA is delighted to partner again with the BDSRA (Batten disease support and research association) for their annual conference that is yet again online. As last year, we will be sending out conference boxes full of activities and conference…
The official Single of the Batten Disease Awareness campaign in now available to pre order on iTunes and pre save on Spotify!! After reaching No.2 in the Official UK Physical Charts with his cover of East 17’s classic Stay Another…
Notice is hereby given that the 2020 Annual General Meeting of the Batten Disease Family Association will be held via Zoom video-conferencing on Saturday 12 June 2021 at 10:00. Given that the Covid-19 restrictions are only in process of being…
HAVE YOU SIGNED UP YET???? ‘13 in whatever way to raise 13k for Awareness Day ’We have launched an exciting fundraising event for Awareness Day to raise much-needed funds for the BDFA. It is an event that we hope the…
The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…
National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…