Simon is the Deputy Director of Research at Cure Parkinson’s reviewing in January 2022, stand-out research that took place in 2021.

Simon also gives us his top research tips to look out for in 2022 with the repurposing of drugs.

The Cure Parkinson's Trust is an international supporter of both lab- and clinic-based research on Parkinson’s. Originally from New Zealand, Simon has 20 years of experience in the field of Parkinson’s research - in both the academic and biotech sectors. He has been involved in lab-based research as well as clinical studies.

He also maintains the ‘Science of Parkinson’s’ website, which attempts to explain in plain English the research currently being conducted on Parkinson’s.

The Science of Parkinson's, by Dr. Simon Stott:
https://scienceofparkinsons.com/about/
Twitter:- https://twitter.com/ScienceofPD

Cure Parkinson's Trust:-
https://cureparkinsons.org.uk/people/...
Twitter:- https://twitter.com/CureParkinsonsT
Instagram:- https://www.instagram.com/cureparkins...
Facebook:- https://www.facebook.com/cureparkinsons/

If you want to join our mailing list for future speaker sessions or would like the Powerpoint notes of this session then please email us at [email protected]

This presentation gives an overview in April 2022 of research and clinical development for Parkinson’s, starting with an overview of trends. The 350+ active projects will be categorised by their position on the road to the patient and the objective, whether it is for symptom relief or disease modification.

If you would like a link to the presentation slides, just email us at [email protected]

Originally a Ph.D. biochemist, Dr. Kevin McFarthing’s career included R&D leadership positions in life sciences research products with Amersham, diagnostics with Serono, and consumer healthcare with Reckitt Benckiser.

He is joint editor of the Clinical Trial Highlights section of the Journal of Parkinson’s Disease and a member of the Research Committee of Cure Parkinson’s and is first author on a recent review of the clinical trial pipeline in Parkinson’s (https://content.iospress.com/articles... ).

Kevin collates the Parkinson’s Hope List,  a database of potential therapies in research and clinical stages. Here is the link:-

https://drive.google.com/file/d/1NeSy...

He also chairs the Patient and Public Involvement and Engagement group for the Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease program.

Kevin was diagnosed with Parkinson’s in 2012 at the age of 55.

You can follow Kevin's social media on:-
Twitter @InnovationFixer

We were delighted to host Lucy Jung CEO and Alex Dallman-Porter COO of Charco Neurotech, discussing their highly anticipated device the CUE1.

CUE1 is a small non-invasive device that is worn on the body to administer specialised vibratory stimulation to relieve the movement symptoms of Parkinson’s

It combines the principles of Focussed Vibrotactile Stimulation and Cueing, which have been shown throughout scientific literature to improve motor performance and help with freezing respectively.

Their Beta user testers have reported a wide range of benefits including:

Smoother walking and movement
Regaining the ability to dance
Helping fine motor tasks
During initial user trials, they found that their user’s movement improved by an average of 16%, with every participant feeling some improvement, additive to that of their medication.

They have also had reports that the stimulation has a relaxing or reassuring effect, and some have requested to use the device to help with stressful situations like public speaking.

To learn more about "How it works" click here https://charconeurotech.com/how-it-wo...

Or watch Charco's YouTube Video https://youtu.be/7cQ7XMQ2LWI

The CUE1 is available in the UK / Europe and other countries as regulatory approval is gained.

To add your name to the waiting list use this link:- https://charconeurotech.com/waiting-l...

If you have any questions then feel free to message Lucy, Alex, and their team using https://charconeurotech.com/waiting-l...

You can follow their progress...
On Facebook https://www.facebook.com/CharcoLtd/
Twitter @Charcoltd
Instagram @Charcoltd

Diagnosed with Parkinson’s Disease when he was 7 yrs old, Matt has lived with the disease for forty-six years and has become an expert in his own condition. 

His positive attitude is both amazing and very infectious so do take time to watch.

This is a rare opportunity to learn from someone who has so much experience with Parkinson’s disease.

Matt spends much of his time as an advocate for all things PD. 
He has created these videos
https://www.youtube.com/watch?app=des...
https://www.facebook.com/watch/?v=533...
https://www.mirror.co.uk/news/uk-news...

He works with the Havas Lynx group https://www.youtube.com/c/HAVASLYNX/f...

He has a website that raises awareness for PD with a smile and humor so look up https://www.parkylife.com/

Follow him on social media

Twitter
https://twitter.com/MattEagles
and
https://twitter.com/PKYLIFE

Instagram
https://www.instagram.com/matteagles_...
and
https://www.instagram.com/parkylife_o...

We were delighted to welcome Joy Milne who shared her incredible story of how she discovered that she could smell Parkinson's Disease on people.

Her story is so much more than that so please watch as she shares her journey with us and tells us how she is helping to enable the early detection of this disease.

Thank you Joy.

Follow Joy on social media
Twitter https://twitter.com/stumpw0rk50?lang=en

Links:-
https://scienceofparkinsons.com/tag/joy-milne/
https://www.youtube.com/watch?v=pbNpfOZZkBk&t=15s
https://www.youtube.com/watch?v=XB0QgwVffvk&t=0s
https://www.manchester.ac.uk/research/beacons/breakthroughs/parkinsons-early-diagnosis/

We were delighted to host Dr.Catherine Hamilton, a retired medical practitioner and author of the Red Lights on the Brain blog.  Together with Ron Brown, an electronics engineer, Catherine established Well Red Pty a company that produces and distributes the "Well Red Coronet".

The topic of Catherine's talk was, "Red and near-infrared lights – can they help degenerative neurological diseases?"

The potential health value of red light was recognised over a century ago. It took another 90 years for medical researchers to rediscover the potential, and restart research into the health effects of red and near-infrared light on conditions such as Parkinson’s disease.

More information can be found on Catherine's website https://www.wellred.com.au/

Links
https://www.science.org/content/artic...
https://parkinsonsdisease.net/news/li...
https://www.semanticscholar.org/paper...
https://scienceofparkinsons.com/2019/...

NB: Please note that we have no commercial relationship with our speakers. We simply organise topics that our members have shown an interest in and are welcome to receive other suggestions

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An excellent discussion in which Professor Roger Barker shares his expertise on whether it is possible to repair the brain in Parkinson's disease using cell-based therapies?

Questions include:-
What is Parkinson's disease?
What are we trying to repair in PD?
What is the target population for cellular therapy?
How close have we come with Dopamine cell transplants on patients so far?

Professor Roger Barker is a Professor of Clinical Neuroscience at the University of Cambridge and a Consultant Neurologist at the Addenbrooke’s Hospital Cambridge.

He is a primary investigator in the Wellcome – MRC Cambridge Stem Cell Institute and the Director of the MRC funded UKRMP Stem and Engineered cell hub.

His research seeks to better define the clinical heterogeneity of two common neurodegenerative disorders, namely Parkinson’s and Huntington’s disease, and their treatment, especially with experimental cell and gene-based approaches.

More information can be found with these links:-

G-Force PD research http://www.gforce-pd.com/
Transeuro Trial https://transeuro.org.uk/
Professor Roger Barker https://www.neuroscience.cam.ac.uk/di...
Lund University https://www.lunduniversity.lu.se/luca...

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Motivated by a friend’s suffering from Parkinson’s, Dr. Sackner-Bernstein focused on a gap in our understanding of the disease: no one had so far measured the amount of dopamine in the dopaminergic neurons of people with Parkinson’s. This is critically important because he believes dopamine is toxic to these cells, which would then be a driver of neuron dysfunction and death, leading to disease progression.

He published his analysis last summer in the Journal of Parkinson’s disease showing that these critical neurons do not lack dopamine – they have excess dopamine. This led him to design a clinical trial to test a drug that addresses this newly defined mechanism of disease.

About Jonathan:-

Dr. Jonathan Sackner-Bernstein was a renowned clinical trialist in cardiology before leaving academics to pursue medical product development, including drug, device, and biologic therapeutics.

He served as associate director of the FDA’s device center, where he led diverse programs highlighted by the White House’s first Entrepreneurs-in-Residence program, the Center’s innovation initiative that led to the Breakthrough Devices program and a collaboration between FDA and DARPA to develop systems and products for the Medical Countermeasures Program (focused on responses to chemical, biologic and radiologic mass casualty events).

After serving at the FDA, Jonathan consulted for DARPA, with responsibilities including regulatory strategy and commercial transition of their programs/projects. Jonathan supported the launch of DARPA’s Biological Technologies Office, with a primary focus on neuroscience and big data programs.

Jonathan’s academic experience ranges from First-in-Human to international trials, as a clinical investigator and trial leader. Sackner-Bernstein held academic appointments in cardiology at Columbia University and North Shore LIJ Health System (Northwell) following training at Mount Sinai Medical Center. He earned his undergraduate degree in electrical engineering at the University of Pennsylvania.

More information can be found with these links:-

https://www.prnewswire.com/news-relea...

https://en.wikipedia.org/wiki/Jonatha...

https://www.youtube.com/watch?v=0tSCd...

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Twitter:- @NSB4PD

Dr. Alberto Espay is a Professor and Chair of the Gardner Center for Parkinson’s disease at the University of Cincinnati. He has published over 300 research articles and 8 books on neurodegenerative diseases.

The models used to define certain neurodegenerative conditions (such as "Parkinson’s") have largely remained the same for over a century.

The presence of certain pathological markers or the loss of specific populations of cells in the brain have been used to explain the clinical features patients experience. And technological advances have been used to validate rather than question these models.

As a result, each neurodegenerative disorder has become defined as complex, and the wide range of variability between cases has been difficult to explain.

We have come to know a lot about our model of the disease we call Parkinson’s, but next to nothing about each individual affected. And this is important when it comes to developing novel treatments.

Promising new therapies have been tested in large clinical trials, but these studies have involved a broad mix of people with Parkinson's, each bringing their own version of "Parkinson's". Many of these experiments have been started without a clear bioassay to determine the suitability of each participant at the start of the study, which has often led to much difficulty in interpreting the final results.

If we can change this latter aspect, and start matching these therapies to people with the appropriate biology to benefit from them, then and only then can we achieve a first success in disease modification.

Follow Dr. Espay on Twitter https://twitter.com/AlbertoEspay

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An excellent interview with Daphne Bryan,  author of the book "Parkinson's and the B1 therapy" explains this very interesting treatment.

In 2011, the Italian neurologist Dr. Antonio Costantini began treating his Parkinson’s patients with high doses of vitamin B1. As a result, he saw many of their symptoms improve, with no obvious progression in the disease over the five years he worked with them. Daphne Bryan outlines the research and the theories in her book ‘Parkinson’s and the B1 therapy’ and will talk about the therapy’s protocol, its difficulties, and its successes.

Daphne Bryan is a musician and a teacher and has a doctorate in music psychology. In 2010, she was diagnosed with Parkinson’s. Her first book “Music as Medicine, particularly in Parkinson’s” explores how music can be used to reduce symptoms.

In 2017 she read of Dr. Costantini’s work and decided to try the B1 therapy herself. Within a few months, she realised that she had lost most of her Parkinson’s symptoms. The improvements have remained to the present day.

After advising people on how to adopt the therapy on a FaceBook group, she decided to bring together all the information Dr. Costantini had left and write a book that would explain the available research and provide a handbook on the protocol.

Daphne lives in Scotland with her husband.

We do not usually plug products however will take exception with Daphne's book as proceeds go to the "go fund me" page to raise money for a comprehensive trial into B1

So here is a link to Daphne's book on Amazon 

This is a link directly to the Go Fund Me page https://www.gofundme.com/f/high-dose-thiamine-protocol

You can follow Daphne on social media
Instagram https://www.instagram.com/daphne__bryan/  @daphne_bryan
Twitter https://twitter.com/dmbryan1  @dmbryan1
Facebook https://www.facebook.com/groups/parkinsonsb1therapy

Dr. Costantini's official website https://highdosethiamine.org/

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YOU CAN NOW WATCH THE EXPERTS ON YOUTUBE https://www.youtube.com/channel/UCN2A0vGOY6j13Ed1rV64gPQ/videos 

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