Stream if you can

THERE'S NO ONE QUITE LIKE GRANDMA by Fleet Foxes I can see that

Great to see BDFA smashing their Big Give targets Well done everyone

Hey @greg_jenner not sure you got enough credit for your playing at Shane MacGowan’s funeral yesterday

Good way to ensure other companies don’t want to tender for any future government contracts

Not sure that would distinguish it from many others in the North

Today Liz, BDFA’s interim CEO headed to London to the Palace of Westminster for the Westminster Rare Disease day 2024 reception. Read more here facebook.com/bdfauk #RareDiseaseDay #battendisease

Axel F for me. A 12” with lots of very similar remixes.

The BDFA are thrilled to have launched a ‘Text to Donate’ Awareness Campaign which is now LIVE! Thank you to Beefy's Charity Foundation BeefyBotham for your continued support.🧡 Details of how to donate are on the video below! Thank you and Together We WILL Make a Difference.🧡

We are pleased to share Evan's story in memory of his cousins, Ellie Mae and Caleb Brownnutt who both had CLN2 Batten disease Read it here bdfa-uk.org.uk/evans-story/ #battenday2024 #battendiseaseawareness

Hey Tim Dunn have you seen this?

This is Florence, she is 6 & has been receiving Brineura for 3 years.#BecauseofBrineura she can still run,read her favourite books, play with her brother. Help to ensure that ALL children with CLN2 can access Brineura. Please share,comment,like this post #BrineuraForCLN2

Jessica is 9,&has been receiving Brineura for 8yrs, leading a life that has never been seen before,because of Brineura.Full of energy,active,running, scootering,climbing,playing. Help to ensure that ALL children with CLN2 access Brineura.Please share,comment,like #BrineuraForCLN2

The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail. We speak to a family desperate to ensure the treatment continues.

Meet Max,a bright & joyful 3-year-old who has been receiving Brineura for 2 years,following his older sister Holly's diagnosis,with early access to treatment,Max is thriving and making incredible strides in his development. Please sharing,comment,like post. #BrineuraForCLN2

Fun night seeing Danny the Champ and Annie Dressner in Leeds. A new venue for me, The Attic which is south of the river! Who knew?

Proof of Brian Wilson’s genius and a thing of beauty

Two tier NHS

Two tier health service

Batten disease has no cure. But there is a treatment for one variant that halts progress of the disease. Many families in the UK benefit from it. As of today if you are diagnosed you cannot have the treatment.