Happy 60th birthday - and all that jazz - to Prof G!
Thx for all you do for all of us with MS!
Gavin Giovannoni, aka Prof G

Today is #WorldParkinsonsDay .
Emma Tinkler was diagnosed with MS at 33. At 45, new symptoms confirmed she had early-onset Parkinson's.
'From the outside, I look like a fit & healthy 48-year-old woman. (Then) there are moments where you fall into a heap.'
mamamia.com.au/early-onset-pa…

And now I've seen everything...
Sorry to hear Mark Harrington had to go through this while trying to get on a London bus with his mobility scooter.

In sickness & in health...
Josh was diagnosed with MS in 2015, about a year after he and Lauren were married.
Three months ago, Lauren learned she also has the disease.
“In a weird way, it gave us peace of mind because we knew what to expect,” Josh says.
my.clevelandclinic.org/patient-storie…

Seen the hard-hitting Alzheimer's Society ad?
“With dementia you don’t just die once, you die again & again & again.'
Many find it upsetting. I found it honest.
It also reminded me of life with MS.
But with MS it's not just the degeneration of the mind, its the body too.
NIHR PRU in Dementia and Neurodegeneration QM

The Alzheimer's Society said the ad was made with strong input from people living with dementia - no sanitising.
Made me realise what a tough job MS Society UK & MSTrust have.
Shld they show the real challenges of MS (tho we are all different) OR go for hope/living well?
Thoughts?

Obese children are more than 2x as likely to develop MS as aduts, a study says.
Scientists at Karolinska Institutet followed 21,600 children with obesity & 100,000+ children without obesity into adulthood.
It is thought obesity causes low-grade inflammation.
theguardian.com/society/2024/m…

'He fondled me then told me I had MS.'
A Canadian neurologist has been sent back to jail after sexually assaulting 55 women patients.
He asked many to undress tho they were being treated for serious neurological issues such as stroke, seizures & MS.
cbc.ca/news/canada/ca…

Delighted Dr Rhonda Voskuhl has been awarded the 2024 John Dystel Prize for MS Research!
'I think it's likely the creation of the RH Prize & the excitment generated in Milan ECTRIMS 2023 played a role in my getting the Dystel Prize for 2024,' she said.
International Women in MS #iWiMS

And in her The Lancet Neurology profile/re RH Prize
“... this prize will enhance investigation of mechanisms underlying sex-specific effects on disease, leveraging clinical observations of sex differences towards optimal, tailored treatment of women & men.”
newsroom.ucla.edu/dept/faculty/r…

As Epstein-Barr Virus (EBV) gains traction as the cause & potential driver of MS (see Gavin Giovannoni, aka Prof G) pleased to see this The New York Times piece on Yvonne Barr, who helped discover EBV with Anthony Epstein.
When she died in 2016, few newspapers reported it.
nytimes.com/2024/03/21/obi…

We're off!
Great to see Rosemary Phillips co-chairing the 1st Patient & Public Engagement Group mtg - part of NIHR PRU in Dementia and Neurodegeneration QM - NIHR Policy Research Unit in Dementia & Neurodegeneration Queen Mary University of London.
(I'll be doing alternate months).
Including ppl with lived experience in this key research.

MRI frequency?
As someone with MS who lives in the UK - do you get offered an annual MRI of your brain/spine to monitor ur MS?
When answering, do you mind saying what county you are getting treated in? Trying to get an idea if there is a postal code lottery involved...

There are better places to spend a grey Sunday than Mile End Hospital in London having a brain/cervical spine MRI on a Tesla 3 to monitor my MS.
But worth remembering...
In the US (no health insurance):
Brain - average cost $1,325
Spine - $1,400- $7,600
carecredit.com/well-u/health-…

Christina Applegate says she's living in a 'kind of hell' due to her MS diagnosis & the constant pain she's in.
'They call it the invisible disease but it can be very lonely because it's hard to explain to people.'
Her interview:
abcnews.go.com/GMA/Wellness/c…

A UK woman who was left 'shattered' when diagnosed with MS at 39, says pole dancing changed her life.
Not only has it helped physically, but it also improved her self confidence.
'It’s completely changed my life for the better,' says Shelly Sutton.
bbc.co.uk/news/articles/…

Paralympic gold winner Carol Cooke -who has MS- wants women with disability to dream big in sport - no matter their age.
“...just because there’s a number attached to you, doesn’t mean you can’t do certain things.'
Her first Paralympic games? She was 51.
womensagenda.com.au/partner-conten…

Congrats to Dr Sharifa Battashi Centre for Preventive Neurology MS Society UK for leading work recruiting people with MS from lower socioeconomic areas and ethic groups to be ‘peer researchers’. So important.

And some good news … measured impact of clinical MS guidelines on use of DMTs in pregnancy has demonstrated significant change, improving outcomes for women with MS in UK and beyond. Great presentation by the inspiring Lead Centre for Preventive Neurology Prof Ruth Dobson.