The aim of Spotlight YOPD is two fold:

• To raise awareness of Parkinson’s as a condition that affects the young (under 50s) as well as the elderly – in a bid to get better treatment (whatever the postcode).
• To give the newly diagnosed the strength and support to stand up, be counted and help themselves – by working with their neurologist, PD nurse and GP.
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News The Good, The Bad & The Ugly

Collaborate or be damned

Anyone who works in the medical field; specifically in the brain-business, will know of Neuroscientist Dr. Babak Kateb, Founding Chairman and CEO of the prestigious SBMT and Brain Mapping Foundation. Pat O’Brien of the acclaimed Business Rockstars introduced Dr. Babak…‘brain-mapping is what he does.’ Close enough, Lisa Vandeberg explains…

When Dr. Babak says something, I listen. Those running government agencies and wealthy corporate charities to support Parkinson’s; MJFF to WPC to Parkinson’s UK should hear him, and all those in the business of Neuroscience – research, application or innovation should do so too. Here’s why…

Dr. Babak says COLLABORATION is our problem. It’s not money, it’s not brains, it’s not for any other reason. This isn’t the first time by any means he’s said this; he even graced me with a comment or two on my posts about the same thing. Thank you, Doc!

But, what does he mean? He says (I’m paraphrasing): “We need a mind-change both in cultural and governmental thinking.”
It is long-held that competition is what brings out the best in us but…”If I’m a cancer researcher and you are, and we’re both working on the same problem separately and not sharing, we double up on the work and the expense.”

The rationale that government bodies like the NIH use in doling out their money is that diversity is healthy. It’s not; it’s costly and repetitive. The biggest Orgs and Institutes do the same; because they want the victory. It’s sad to think that those Charities have you in mind not solely to make you feel better, but to make themselves look better!

Researchers are taught to hold their cards close to their chest or someone will steal their work. While it’s understandable that intellectual property be maintained, should it be to the point of unmet suffering? Dr. Babak has an answer for that and it’s down to basic book-keeping; credit (awards) are accredited where due, Nobel prizes etc. handed out to those whose work has been of highest merit. I would imaging he’d have the entire structure of how to work together in harmony expediently, respectfully and frugally so that the business of cure becomes the prize! Ultimately, it’s not about secretive exclusion: only with COLLABORATION that is open, accessible and centralized can our list of terrifying disease ever have any real hope of address.

If you don’t know the entity of Dr Babak Kateb, he meets with Popes and Presidents, 4-star Generals and Governors, shoots the breeze with the likes of Stephen Hawking, and even talks to peons like me. That accessibility speaks volumes; he’s really only interested in one thing and it’s not an award, its integration.

You may think that’s what all institutions do. Far from it.

In an electronic exchange, Dr Babak told me the top five reasons that prevent real progress in neuroscience:
1) Lack of collaboration.
2) Lack of incentives to share data and partnership.
3) The system of grant making is inadequate and by design is not encouraging unity in science (unhealthy competition) causing animosity between scientists and institutions.
4) The process of review at the NIH* is rigged with no transparency and oversight.
5) NIH spends 6.5 billion per year on neuroscience and has little to show (no new treatment for any neurological disorders, because the money is not spent wisely and targeted).

The National Institute of Health is the largest single public funder of biomedical research in the world

Dr. Babak raison d’être has always been to integrate all aspects of neuroscience disciplines; researcher to nanotechnology, cellular therapies to devices to imaging. Cross-pollinate everything in an open environment; work together.

It can be a little soul-destroying, all this advocacy business. I prefer ‘activist’ as I see no reason to celebrate Parkinson’s. But watching Dr. Babak et al (because he doesn’t work alone) honouring Stephen Hawking with the Beacon of Courage and Dedication Award helps me put things in perspective.

I invite you to hear him – what he has to say is utterly fascinating. Business Rockstars: Dr Babak Kateb interview by Pat O’Brien.

Our brains are made up of billions of entities that work together…why shouldn’t we? Most grateful, Dr. Babak.

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The Benefits of Exercise

Love That Racket

PD, by its very nature, is unpredictable. Julie Walker uses that ‘element of surprise’ to her advantage on the tennis court, having taken up the sport – almost by accident – post diagnosis. Here she serves her first article for Spotlight YOPD.

Julie on court

I was diagnosed with early onset Parkinson’s at 44 in November 2012.   I have a walking stick and a blue badge and you might not want me as a tennis partner. On the tennis court: I am slow, I am clumsy, I shuffle. This may not come as a surprise, after all I have just told you I have a degenerative neurological condition, which affects movement.

On the tennis court I am an oxymoron: I can run, I change direction, I have co-ordination. If your ideal tennis partner is someone tidy and helpful with a sassy walk then don’t pick me. If however, you want a tennis partner who plays twice a week, is competitive and quite often confuses the opponents into miss hits, then choose me.

On the tennis court, the game is not the problem; it’s picking up the ball, walking between ends, tidying up and walking to the car park. I obviously need a racket to play, but could also do with a walking stick to change ends.

When I play tennis I don’t have PD.

(more…)

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News The Good, The Bad & The Ugly

The Sticky Subject of Alpha Synuclein

pic credit : Thomas Splettstoesser (www.scistyle.com)

Lisa V tries to keep it simple and explains the deal with alpha-synuclein. Originally published online a couple of years ago when a-SYN was still new to the PD community, this article has been updated in the light of more recent research. All evidence from then and now points to this sticky substance being the cause of Parkinson’s.

Let’s gets a couple of abbreviations and definitions out of the way first:
a-SYN is Alpha-Synucein.
PD is Parkinson’s (if you couldn’t work that one out, you’re really in trouble).
Aggregates are basically debris or detritus; organic matter produced by the decomposition of organisms.
Alpha-Synuclein is a sticky protein found throughout the body, but the motherlode is in the brain.

Ideally, the a-SYN protein appears to function in the loading of vesicles; small spherical bits of membrane that carry neurotransmitter molecules to the pre-synaptic end of a neuron. This, in turn, bumps into the business end of another neuron, allowing for the neurotransmitters in the vesicles to be released into the synapse.

The top is the presynaptic neuron; the bottom, postsynaptic. They are both separate neurons in this relay event, passing the baton. In Parkinson’s and otherspecific neurodegenerative diseases, it’s been found that a-SYN proteins are ‘misfolding’, creating clumps or aggregates. Like almost all proteins, after a-SYN is synthesised by the cellular machinery (i.e. ribosomes – they build long chains of amino acids, one at a time – exhausting!), it is supposed to fold in a certain way; the entire function of a-SYN is dependent on proper folding. If the folding goes wrong; the protein fails to function. The fall-out of this wayward behaviour is aggregation – crap everywhere that ‘gums up’ the works.

(more…)

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News

Clocking In for Young Onset PD

The above video launches our campaign marking the bicentenary of James Parkinson’s discovery of The Shaking Palsy – later named after him as Parkinson’s Disease. Please watch and share… We are asking that everyone – whether or not they have any contact with anyone with this neurologic condition – posts a picture of a clock on Twitter to indicate that our wait for a cure continues. Please use the hashtag #YOPD200.

You can post it any time this year – it doesn’t have to be this month… we’ll wait.

This campaign from @SpotlightYOPD is intended to highlight YOPD – Young Onset Parkinson’s which impacts on the lives of an estimated 6,500 people in the UK, diagnosed in their 20s, 30s and 40s. It also, inevitably, takes a significant toll of their families and friends.

Those diagnosed at a younger than expected age have longer to live with this degenerative chronic condition; longer to potentially wait in hope for a cure. Better treatment, care and information early after diagnosis will lead to a better quality of life with the condition. People with PD will be able to play an active role and stay in work for longer – benefitting society, their community and the economy.

On Tuesday 11 April 2017 – International Parkinson’s Awareness Day – we’ll be asking people to paste a screengrab of their smartphone clock set at 17 minutes past 6 or, ideally 18:17 in the 24 hour clock – to mark the 200 year wait. Please RT, spread the word and get involved. Please use #YOPD200.

 

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