Anyone in the UK interested in a webinar ... - Cure Parkinson's

Cure Parkinson's

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Anyone in the UK interested in a webinar entitled “Getting Involved in Trials and the PD Community”?

EJMo profile image
EJMo
6 Replies

PD Frontline will be hosting a webinar on 16th December 2022 at 10am. The webinar is entitled “Getting Involved in Trials and the PD Community” and will centre around three themes:The importance of taking part in research and upcoming trialsThe Parkinson’s communityEquality, diversity, and inclusion in Parkinson’s researchWe will have talks from representatives of several exciting trials and studies as well as from community-based support groups. Our agenda is attached to this email and further details about or presenters can be seen below: ‘Rallying to the Challenge’ Survey: Rosie Fuest presenting on behalf of Cure Parkinson’s. This was a survey created to understand everyone's experiences of clinical trials, from trial participants to those who design and those who commission trials in Parkinson's.AsPro-PD (Ambroxol to Slow Progression of Parkinson’s Disease – phase III of the Ambroxol trial): Professor Tony Schapira. Professor Schapira will be the lead investigator for Phase III of the Ambroxol Trial and will be discussing what to expect in the upcoming year as the trial is set to commence.Parkinson’s Families Project (PFP): Simona Jasaityte on behalf of PFP will be providing an overview of the study and how to get involved.EJS ACT-PD: Georgia Mills (project manager for the study) presenting on the first multi-arm multi-stage trial for PwP.Diversity in Research: Kuhan Pushparatnam will be joining us to discuss the PUK race diversity and inclusion group and living well with Parkinson’s. Kuhan has a YouTube channel and a podcast where he talks about different aspects of life with Parkinson’s.Move into Wellbeing®: A Chiswick based registered charity founded by Donna Schoenherr, which offers dance classes to people with Parkinson's and other mobility issues. We will be joined by Donna and their chair, Damian Wood. To register please follow this link: ucl.zoom.us/webinar/registe...

There will also be opportunity for Q&A at the end. The webinar will be recorded and available with closed captioning after the event if you cannot make it on the day.

PD FrontlineUniversity College London,​ Royal Free Hospital,Pond St | London NW3 2QG| T: 020 8016 8413 | E:  pdfrontline@ucl.ac.uk Twitter: @pdfrontline | Instagram: @pdfrontline_rapsodi

ucl.ac.uk/ion/research/depa... 

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EJMo
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6 Replies
jeeves19 profile image
jeeves19

Thanks but anything that declares Diversity as one off the ingredients - in the current climate - deters me immediately ☹️

ZebraDoodle profile image
ZebraDoodle in reply tojeeves19

Buried in that lot are Ambroxol and EJSActPD trials. My consultant was quite enthusiastic about last one (he didn’t mention it by name but said to look out for this).

genesurf profile image
genesurf in reply tojeeves19

"Equality, diversity, and inclusion" sounds good to me. Testing a wide spectrum of people will result in better results. No more errors like in the past-- i.e. missing women's heart attack symptoms because most of the research had been on male subjects.

jeeves19 profile image
jeeves19 in reply togenesurf

yes I agree from a medical perspective totally, and when left to naturally evolve (New York in the early part of the century?), diversity is enriching and dynamic. But now it’s just all the forced, hateful social, racial, cultural activists with their inflexible blueprints that always make me run to my nuclear shelter. It’s strange (we’ll it’s not really cause I’m going to explain my point below 😂): I was watching The Beatles last week performing Hey Jude. In the Na Na Na ……….. bit, about 100 young people storm the stage: there are Sikhs, Jamaicans, Brits, Americans, Swedes, boys, girls, guys in suits, hippies , hell there’s even a ginger haired person in there 😂. And it’s beautiful and heartwarming. And do you know why? Because it’s natural and real and unforced and tainted with their genius which rarely let them miss.

Unlike today of course whereby every advertisement, movie, theatre director is given a list of ‘ ethnic, gender, transgender, disabled (sorry……….I mean ‘less abled……silly me!) religious and gay minority representatives to be included with refusal to comply with may necessitate the termination of your employ’, that It’s so false, so bullying, threatening and similar to McCarthyism in the 1940s/1950s. It’s equality by tick box and media hysteria and spreads fear and loathing, not only in Vegas but around the world.

You never thought you’d get that as a response did you?!😂

Long live The Beatles ❤️

Happy21a profile image
Happy21a

link for registration does not work!

EJMo profile image
EJMo in reply toHappy21a

ucl.zoom.us/webinar/registe...

I don’t know what it is about HealthUnlocked, but somehow they don’t print this properly in my original post.

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