“Laura’s journey with Batten disease taught me so many things: she inspired us and was a blessing to us all” Ellen Bletsoe talks of the ‘voices of Batten disease’ as she tells the story of her daughter Laura, who died…
“Our story is filled with such sadness, but it has been compensated with love beyond what we knew was possible” Sophie Pether, mother to 9 year old Isabel who has CLN2, describes the battles they have faced, and the ‘living…
“At UCL we chose to concentrate on what we considered the two most promising approaches - gene therapy and drug treatments” Sara Mole, leading Batten scientist and researcher, shares her story about her career working in Batten disease. I began…
“This devastating journey has taught our family just how precious life is” Liz Rich, grandmother of Nicole (8), Jessica (4) both with CLN2, and their brother Louis, gives us a grandparent’s perspective on how Batten disease impacts the whole family.…
“I love going to Rangers and I’m now doing my Bronze Duke of Edinburgh Award…Batten disease will not stop me.” Annabelle Hover, aged 14, tells of the difficulties of living with CLN3 as a teenager, and the amazing achievements she…
“We can’t stay hidden away forever, there will be tough decisions... but for now we will keep on going and hope things start improving soon.” Donna Brown tells her story about the highs and lows of life in ‘lockdown’ with…
BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…
International Batten Disease Awareness Day Tuesday 9th June 2020 4 DAYS TO GO! We are getting very excited about Batten disease awareness day next Tuesday 9th June which we are sharing with international peers. We are kicking off our awareness…
BDFA INSTAGRAM UPDATE! After a LOT of back and forth and trying to gain access to the BDFA instagram account, we have had to create a new account, so please follow us and tag the new #bdfa_battendiseaseuk https://www.instagram.com/bdfa_battendiseaseuk/ Come and…
ONE WEEK TO GO until International Batten Disease Awareness Day! What you can do to raiseawarenes and be orange on the day? Use #battendiseaseuk #battenday2020 on your social media posts Dress in orange, but not just you, the dog, the…