David Crellin

Don’t give ideas. I have a 500 watt bass system from when I played fretless bass, and a 1,000 watt PA rig,90 watt accoustic guitar combo, wireless mics. Now after playing guitar from age 6 I can’t sing and cannot play instruments. Voice banking in January.

And as part of the Focus C9 study I’m a sentinel participant MRI scans of the brain are a regular feature.

Hi Mark, I began participating in an MRI study of ALS at Newcastle-upon-Tyne, UK just over six months ago. Three hours of intensive scanning every six months. The researcher is applying for grants to extend the study and I have suggested my 29yr old son joins the study. He carries the c9 mutation I have.

I have long wondered whether semantics is relevant to this topic. Here in the UK the bathroom is where we go for a bath. We go to the toilet or loo to ‘relieve’ ourselves.

However, the debate about how to avoid constipation is valid. Having spent three days as a sentinel on a clinical trial being checked every four hours at least, eating very…[Read more]

No pain at all. Whoopee!

I wish. I have to ‘move around and be physically active by standing and walking for 30 minutes.’ That will be a challenge!

Interestingly the trial I’m about to start is a Phase 1b/2a first-in-human trial. Progress & dosing regimen in Phase 2b is dependent on safety & efficacy results from Phase 1b. Some participants will skip Phase 1b.

For better or worse, as the first participant I’m a sentinel. I have more intensive monitoring, but also a greater chance of placebo.…[Read more]

I have the trial info sheet now:

Period 1 (phase 1b?)  five lumbar punctures with one intrathecal injection over 12 weeks.

Then period 2 (phase 2a?)  potentially up to 4 intrathecal injections with an additional monitoring lumbar puncture over 24 weeks.

I hope it’s as painless as you suggest. Having watched as a malignant melanoma was cut out o…[Read more]

Spot on. When my feet (in socks) touch the ground my legs jump higher than I can raise them. And if I recount any item with a hint of emotional content I start weeping.

You wait for a bus for hours, then two come along.

I start dosing in the Wave WVE-004 trial next Monday. And then read in ALS News Today about another genetic therapy targetting c9orf72 ALS being developed at SITtraN where I will be next week.

So I may well meet Guillaume Hautbergue, PhD, and find out more.

Hi Lisa, so much in common. It took a year for me to receive a confirmed diagnosis after a probable diagnosis two months earlier. And that’s from a neurologist in Newcastle upon Tyne, UK previously named Neurocastle when a former prof was in charge. We have one of the top genetics centre in the UK too.

If I were you I’d try to find a specialist…[Read more]

Hi Lisa, I feel for you. Thankfully my family is fit and healthy.

I was diagnosed March 2020, just as Covid changed our lives a bit.  From early on I had to rethink my approach to exercise. I’ve spent a very active life and the ‘No pain=no gain’ mantra I’d applied throughout my life failed me. I still managed to walk 19 miles the week I was…[Read more]

Bon jour Jean-Pierre. J’etudiais le francais et l’allelmand il y a 40 ans a l’universite. Et a 63 ans ca marche encore!

Glucklicherweise wohne ich in England und die Professor Pamela Shaw studierte mit meiner Schwester. Mein Doktor wusste nichts von diesem WVE-004 Prozess. Ich selbst habe eine E-mail nach Prof Shaw gesendet, nachdem ich sie an einer Radiosendung gehort.

Thanks so much. I have a phone conversation booked with one of the nurses tomorrow to discuss the process and ask any questions.

My wife had a spinal block when our first son was born, and she shares your experience of the absence of pain. I had a malignant melanoma removed from my arm under local anesthetic while I watched! So I’m not over…[Read more]

Thanks, Amanda. Yes, I’m fine. It was just a bad cold – Covid after double Oxford Astra-Zeneca.

Good evening (UK time 17:36), I’m so happy to have received emails this week telling me I’m selected for the Wave FOCUS C-9 WVE-004 clinical trial and start 11 Oct with the first …… intrathecal injection. So Amanda, we can compare our experience of having needles stuck in our spines! What joy.

My screening visit for the Wave FOCUS C-9 WVE-004 trial is sheduled for 30 Sep and first dose 11 Oct.