09/08/2026
Just listened to Prof Pam Shaw on Desert Island Discs.
It's been virtually 20 years since I was involved (in my tiny undergraduate way) in MND research and it turns out that Pam and a team from the Sheffield Institute for Translational Neuroscience, have been battling NICE's refusal to classify the MND drug tofersen, for two years, arguing it is treatment for a highly specialised condition, rather than just a standard drug.
The team have developed the drug: an antisense oligonucleotide (A*O) that targets a specific genetic change in a gene known as SOD1, which is causes MND.
Clearly, identifying individuals at familial risk of inheriting MND was not a something anyone wanted. Until, that is, a truly effective drug to combat the symptoms of MND could be found.
But now it has.
And the results are, frankly, impressive - more than I ever thought might be possible: not only slowing of progression, but reversal of muscle wastage and, most significantly, breathing difficulties.
Anyone who has known me or my family for any time will know what a day this is. Any family who has had MND visit them, their lives, hopes and dreams forever redirected, will be celebrating today.
And the lovely, modest Pam Shaw chose Handel's Halleluia Chorus as her first choice on DID.
Apt.
I had only been playing that very piece on Ian's 1976 National (oh, yes) Panasonic turntable last week.
Over the years, I have liked to imagine my Dad and DB standing side by side, somewhere, smiling down/up/across at the rest of us pootling through our days, tripping up, getting back up, dusting ourselves down, trying, failing, arguing, falling out, falling back in, etc etc.
Two men, no longer opponents.
Intertwined. For eternity.
This morning, they are here in my kitchen, I swear.
And Dave, who always had the biggest of grins, is grinning harder than ever... his beautiful blue eyes twinking.
Thinking of all those chaps (and chapettes) at Lymm Rugby Club who did so much over the years to support not just DB, but Mum and the three of us. You were a mahoosive support: raising money for a bed to sit Dave up so he didn't choke and then, later, to raise money for the MND Association to support others diagnosed with this most devastating of conditions. And you managed not to tip him out of his 1980's wheelchair while carrying him down the stairs in after a "couple" of pints on a Saturday afternoon. AND - Mark Jackson, I'm still reeling from this revelation at PC's wake last week - hanging on to the back of his belt while someone unzipped his fly so he could p*e, laughing, out of the fire escape behind the kitchen 🫣
But especially, this morning, thinking of you, Rob Berry. 😁
