Episodit
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Dr Roberto Cilia spoke to us on the topic of "Mucuna Pruriens and the future of Parkinson's care in low income countries"
There is much discussion by PwP as to the benefits of using this "natural " form of Levadopa as an alternative or in addition to prescribed Levadopa so it is very interesting to hear this presentation and the answers to the very high number of questions in the Q&A that follows it.
Roberto's main focus is on using mucuna to treat Parkinson's patients in countries where levodopa is either not available or not affordable. This is a great opportunity to learn about this important legume!
Dr. Roberto Cilia is a renowned movement disorder specialist based in Milan, Italy. With extensive experience in neurology, he has dedicated his career to improving the lives of patients suffering from Parkinson's disease and other movement disorders. -
We are delighted to be able to share with you our latest interview with
Dr Filip Scheperjans who shared with us his fantastic work on "The importance of the gut-brain axis in Parkinson's" which was followed by an excellent Q & A session.
More about our expert:-
Dr. Filip Scheperjans is a leading expert in neurology, specialising in treating Parkinson’s disease and focusing on advanced methods and gastrointestinal symptoms.
He earned his Licentiate of Medicine from the University of Düsseldorf in 2006 and completed his Neurology specialisation at the University of Helsinki in 2013. In 2008, he received his Doctor of Medical Science, focusing on neuroanatomy, and became Associate Professor in 2020 at the University of Helsinki.
Dr. Scheperjans investigates the relationship between gastrointestinal symptoms and the microbiome in Parkinson’s disease, exploring novel treatment strategies. His work includes advanced therapies like drug infusions and deep-brain stimulation, supported by major organisations such as the Academy of Finland and the Michael J. Fox Foundation. -
Puuttuva jakso?
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Prof Sonia Gandhi joined us to share her expertise on how Mitochondria affects PD with an excellent presentation followed by a very probing Q&A by our well informed audience.
Prof Gandhi is a leading expert in the process of protein misfolding, in which smaller proteins, monomers, join together to form larger proteins, oligomers, and how this process may drive organellar dysfunction and cell toxicity in neurodegeneration.
Sonia obtained a BA in Neuroscience at Trinity College, University of Cambridge, in 1996, and completed her degree in Medicine at New College, University of Oxford, in 1999. She trained in postgraduate medicine at the Hammersmith Hospital, Royal Brompton Hospital, National Hospital for Neurology and Neurosurgery, and Whittington Hospital.
Sonia was awarded a Wellcome Clinical Research Training Fellowship to complete a PhD in Neuroscience at UCL Institute of Neurology in 2004. In 2007, she trained as a Specialist registrar in Neurology, and took up an NIHR Lectureship in Neurology at Imperial College in 2009. In 2012 she was awarded a Wellcome Trust Intermediate Clinical Fellowship, and established her laboratory at the UCL Institute of Neurology in October 2013. She was awarded a laboratory secondment to the Francis Crick Institute in 2016 -
We had the pleasure of a presentation by Dr Jonathan Sackner-Bernstein, MD, on the topic of "Why I am optimistic that we might now have a Silver Bullet for Parkinson's", followed by a Q&A session of almost 50 probing questions from our audience.
Dr. Jonathan Sackner-Bernstein is transforming the treatment of Parkinson’s disease (PD). First, he discovered that the brain cells (dopaminergic neurons) in Parkinson’s patients are exposed to excess dopamine, reaching toxic levels. Next, he identified a drug that reverses disease pathology by reducing dopamine levels in 10 studies using laboratory models of PD
As an academic physician, Sackner-Bernstein leverages lessons learned at the US Food and Drug Administration (where he received 2 Commission’s Awards) and the US Defense Advanced Research Projects Agency (in a central role for the launch of the US Biological Technologies Office with its initial focus on neurotechnology).
Jonathan’s history of identifying contrarian views is remarkable for consistently being proven correct by subsequent studies and analyses. His optimism that PD will be conquered by reducing dopamine is supported by scientific data. And this drug therapy is poised to enter Phase 2 clinical trials, with data as soon as 6 months following trial launch.
More about the speaker:-
Dr Sackner-Bernstein is soon to launch a Blog to provide updates so please register here https://www.parkinsonsdisease.blog/
A new website has also been launched by Dr Sackner-Bernstein on which you will see his distinguished team including two of our previous speakers, Prof Roger Barker who spoke o Cell replacement therapy and Dr Lorraine Kalia more recently sharing her expertise on Drug replacement so take moment to watch those recordings here on our channel or listen to them on Spotify
https://www.rightbrainbio.com/ -
We had the pleasure of interviewing Dr Michael Okun on the topic of "Practical strategies for living a happier life with Parkinson's".
Dr Okun is a worldwide recognised leader on Parkinson’s disease, is the distinguished Professor of Neurology and Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida Health. The UF institute he co-founded with Kelly D. Foote, M.D. is a one-stop patient-centred clinical-research experience for national and international patients seeking care.
Dr. Okun has served as the National Medical Director/Advisor for the Parkinson’s Foundation since 2006. His research has been wide ranging and he is best known for his exploration and innovation in neuromodulation and deep brain stimulation.
He has published over 600 peer-reviewed articles and his book, “Parkinson's Treatment: 10 Secrets to a Happier Life” was translated into over 20 languages. His most recent books are “Ending Parkinson’s Disease” and “Living with Parkinson’s Disease”.
Dr. Okun was recognized in a 2015 White House ceremony by the Obama administration as a Champion of Change for Parkinson’s Disease -
We were delighted to host Dr Michelle Sexton who presented on the topic of "How can medical cannabis help people with Parkinson's" and here is the recording of the event.
About the speaker:-
Dr. Sexton is an integrative medicine specialist and respected pioneer in the field of medical cannabis. She has over thirty years of experience as a midwife, herbalist, and naturopathic doctor. She completed a postdoctoral fellowship at the University of Washington in the Departments of Pharmacology/Psychiatry and Behavioural Sciences. There, she studied the endocannabinoid system and its roles in neuro-inflammation and neuro-degeneration.
To find out more about Michelle here:-
Website :- https://www.ecsdoctor.com/
Website for scheduling a patient consultation is https://www.msextonnd.com/
Instagram :- / dr.michellesexton (@dr.michellesexton)
Facebook: / msextonnd
Michelle's latest book can be found here :- https://shop.ingramspark.com/b/084?U0...
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We are self-funded, so pay for our costs ourselves, which include licenses for our secure Webinar platform, our Podcast hosting platform etc , in the hope that some of our speaker's content, may improve the symptoms of another PwP
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We were delighted to host Prof Christine Klein who talked to us about "The importance of genetics in finding a cure for Parkinson's".
It was a really interesting presentation and followed by a very good Q&A with excellent questions from you our audience, so thank you.
It is now a very worthwhile Podcast and video (on our YouTube Channel https://www.youtube.com/channel/UCN2A0vGOY6j13Ed1rV64gPQ/featured ) to help understand more about this important topic.
About the speaker:-
Christine Klein is a professor of neurology and neurogenetics. She studied medicine in Hamburg, Heidelberg, Luebeck, London, and Oxford before moving to Boston from 1997 to 1999 for a fellowship in molecular neurogenetics. She completed her neurology training at Luebeck University in 2004, followed by a series of summer sabbaticals in movement disorders in Toronto, Canada in 2004 to 2015. Her research has focused on the clinical and molecular genetics of movement disorders and its functional consequences. In 2009, Dr. Klein became director of the newly founded Institute of Neurogenetics in 2013 in Luebeck, Germany.
Prof. Klein has published more than 500 scientific papers. She is deputy editor of ‘Movement Disorders’ and associate editor of ‘Annals of Neurology’ and serves as acting past president of the German Neurological Society. Ten of her former mentees have been promoted to the level of assistant, associate or full professor.
Find out more about Christine and her great work here:-
https://www.neurogenetics-luebeck.de/...
https://www.michaeljfox.org/researche...
https://www.youtube.com/watch?v=6xVPl...
https://www.youtube.com/watch?v=zDkaJ...
https://www.linkedin.com/in/christine... -
We are excited to share our latest interview with you all, in which Dr Raul Martinez- Fernandez explains the therapy of Focused Ultrasound, a therapy that offers appropriate candidates with an alternative to the more intrusive DBS. It is of course not a replacement for DBS, simply an alternative offering a solution for those with differing symptoms.
More about Dr Martinez-Fernandez:-
Dr Raul Martinez-Fernandez is a neurologist and clinical researcher, Associate Professor of Medicine at the Neuro research Centre HM CINAC; HM Puerta del Sur Hospital; CEU San Pablo University, Spain.
After getting his neurology diploma in Spain in 2008, he trained at the Deep Brain Stimulation department of the National Hospital of Neurology and Neurosurgery – Queen Square (London). Subsequently, he attended a 2-year fellowship in Grenoble (France), the birthplace of modern Functional Neurosurgery, under the wings of Professors Paul Krack and Elena Moro. In Grenoble, he started his PhD in Medical Science that he obtained in 2017. Since 2015 he is coordinator of the high intensity focused ultrasound program in HM CINAC (Madrid), directed by Prof Obeso.
He has published several papers on the topic of focused ultrasound in Lancet Neurology and The New England Journal of Medicine. The experience gathered has allowed him to be invited for lecturing worldwide, to provide support to teams which are starting to use the technique, and to receive several research awards. -
We are delighted to host Dr. Simon Stott again in what is becoming our regular start to the year's presentations. And what better way than to hear Dr. Stott's main PD research takeaways from 2023 and research results he will be looking for in 2024.
For those of you who are unfamiliar with Dr. Stott's work, Dr Stott is the Director of Research at Cure Parkinson's. The trust is an international supporter of both lab- and clinic-based research on Parkinson's and aims to find treatments that will slow, halt or reverse the condition.
Originally from New Zealand, Simon has more than 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 (https://scienceofparkinsons.com/about/), which explains in plain English the research currently being conducted on Parkinson's.
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Light Therapy is an area of great interest and hope for PwP worldwide, as shown by the viewing numbers for our 3 previous NSB4PD sessions over the last 48 months.
Here in this interview with Dr Wayne Markman, CEO of SYMBYX, we explore how photobiomodulation devices directly address the gut, vagus nerve and brain.
SYMBYX's mission is to develop medically approved light therapies to reduce chronic Parkinson’s symptoms - early trials and clinical data show improvements across a range of symptoms and with a very high safety profile. SYMBYX are committed to increasing clinical trial evidence supporting light therapy as a complementary and effective intervention that fits into a person with Parkinson's medication, healthy diet and exercise regime.
About the speaker:-
Dr. Wayne Markman is South African-born and emigrated to the US in 1986 and then to Australia in 2000. Dr. Markman obtained a BA in Economics from Macalester College in 1991 and an MBA from Harvard University in 1996; worked as an investment banker, he decided to pursue a career in medical science at Macquarie University in Sydney, specialising in neuroscience and movement disorders.
Dr. Markman worked in a physiotherapy clinic before founding SYMBYX, a company dedicated to developing light therapy devices to alleviate the impact of chronic conditions like Parkinson's.
He has been personally affected by PD with several close family members diagnosed previously, so this research has added meaning and focus for him
With a focus on the gut-brain axis, SYMBYX is committed to providing complementary and effective interventions for Parkinson's patients worldwide.
By next year, SYMBYX will have completed 4 clinical trials with publications in leading peer reviewed journals and commenced 3 additional large scale randomised control trials investigating motor, non-motor and medication efficacy implications of infrared laser treatment to the gut.
This is SYMBYX's website :- https://symbyxbiome.com/
IF YOU CAN, PLEASE DONATE TO NO SILVER BULLET 4PD.
We are self-funded, so pay for our costs ourselves, which include licenses for our secure Webinar platform, our Podcast hosting platform so that we can share these sessions with more PwP worldwide, in the hope that some of our speaker's content, may improve the symptoms of another PwP
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Annelien and Richelle delve into a topic that is often overlooked, but holds great importance for them as female Parkinson's Disease (PD) advocates.
They shed light on how Parkinson's impacts a woman's life, focusing on the various hormonal stages and how they can affect symptoms and the effectiveness of medication. They bring attention to the challenges of coping with a Parkinson's diagnosis in the face of stigma. Moreover, they discuss the significance of considering sex and gender in treatment and research, emphasizing the need for women to advocate for themselves in order to improve their care and raise awareness among other women. This discussion is open to anyone who identifies as a woman, as well as those who care for PD women, including care partners, family members, health professionals, and researchers working in the field of Parkinson's.
Richelle Flanagan is a registered Dietitian and was diagnosed with YOPD shortly after the birth of her second child. She is an ambassador for the World Parkinson Congress in Barcelona, 2023. She is particularly passionate about two areas (1) the importance of diet for PD and (2) the unmet needs of women with PD. She is a co-founder of the Women’s Parkinson’s Project (www.womensparkinsonsproject.com) and co-founder of a digital health start-up (My Moves Matter ; www.mymovesmatter.com), a digital self-care companion to empower people with Parkinson’s to live better lives.
Dr. Annelien Oosterbaan is 40 years old and got diagnosed with YOPD 7 years ago. She is a proud mother of 4 children and lives in Rotterdam, the Netherlands. She noticed a cyclic pattern in her PD symptoms and when preparing for her last pregnancy she found out there is such a huge lack of knowledge concerning the hormonal impact on PD symptoms. She made it her personal mission to fix this gender gap and started her research project called 'Women and PD' at the Radboudumc Nijmegen (NL). She just launched the online registry for pregnancy and PD, www.pregspark.com, and is one of the authors of the booklet 'In her shoes' (www.yopdwomen.com). -
Some of the most promising disease modifying therapies being developed at the moment are based on drug repurposing (eg Exenatide/Ambroxol), making this webinar essential for anyone suffering from Parkinson's or caring for someone suffering from Parkinson's.
Dr Lorraine Kalia shares with us her expertise and brings us up to date with the latest news.
Dr. Lorraine Kalia is an associate professor and a clinician-scientist at the University of Toronto in Canada. She is dedicated to Parkinson's disease, both in her clinical practice as a movement disorders neurologist and in her research program as a neuroscientist.
She is the co-editor-in-chief of the Journal of Parkinson’s Disease and co-chair of the International Parkinson and Movement Disorder Society Scientific Issues Committee.
Her research focuses on understanding the fundamental molecular processes that lead to neurodegeneration in Parkinson’s disease and finding new therapies that can target these molecular culprits to slow down or even stop the disease.
Dr. Kalia recently presented at the World Parkinson's Congress in Barcelona.
More can be found out about the speaker here:-
https://lmp.utoronto.ca/faculty/lorra...
Website https://kalialabs.org/
To find out the latest trails if you are based in or around Toronto Email [email protected] -
We are delighted to welcome back the CEO and Founder of Charconeurotech to tell us more about the CUE1 device to help with Parkinson's symptoms
Charco Neurotech, the company behind CUE1, was founded by CEO Lucy Jung and named after Professor Charcot, who discovered the therapeutic effects of vibratory stimulation on Parkinson's in the 19th century. Since then, numerous studies have been conducted on the ability of stimulation to alleviate movement symptoms associated with the disease.
CUE1 combines the principles of focussed vibrotactile stimulation and cueing, both of which have been scientifically proven to improve motor performance and reduce freezing of gait in people with Parkinson's. The company's testing has demonstrated clinically significant improvements in motor symptoms, including smoother walking and movement, and better fine motor task performance.
https://charconeurotech.com/
CUE1 combines the principles of focussed vibrotactile stimulation and cueing, both of which have been scientifically proven to improve motor performance and reduce freezing of gait in people with Parkinson's. The company's testing has demonstrated clinically significant improvements in motor symptoms, including smoother walking and movement, and better fine motor task performance.
CUE1 is already being used by around 1,000 people in the UK and Addenbrooke's Hospital in Cambridge, UK, has recently begun trialling the device with its inpatients, as reported in this news article:
https://www.cuh.nhs.uk/news/high-tech...
To add your name to the waiting list use this link:- https://charconeurotech.com/register-...
IF YOU CAN, PLEASE DONATE TO NO SILVER BULLET 4PD.
We are self-funded, so pay for our costs ourselves, which include licenses for our secure Webinar platform, our Podcast hosting platform and soon-to-be-launched paid advertising on Facebook and Instagram so that we can target and share these sessions with more PwP worldwide, in the hope that some of our speaker's content, may improve the symptoms of another PwP
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Dr. Peter Tass from Stanford Medical School talks to us about “The Parkinson's glove & Vibrotactile fingertip stimulation to ease Parkinson’s symptoms”. A very very interesting device currently being trialed in the USA, with huge potential to dramatically improve the lives of many with PD
About the Speaker:-
Peter Tass studied medicine (MD, Ulm and Heidelberg Univ., Germany), physics (PhD, Stuttgart Univ., Germany), and mathematics (diploma, Stuttgart Univ.) and made a Habilitation in physiology (RWTH Aachen University, Germany).
Since 2017 he is Professor of Neurosurgery in the Department of Neurosurgery, Stanford University Medical School. Peter Tass investigates and develops neuromodulation techniques for understanding and treating neurologic conditions such as Parkinson’s disease, epilepsy, dysfunction following stroke and tinnitus. He creates invasive and non-invasive therapeutic procedures by means of comprehensive computational neuroscience studies and advanced data analysis techniques.
Peter Tass has published more than 170 peer-reviewed papers, is inventor or co-inventor on more than 270 patents and received a number of national and international awards.
Stanford lab homepage: https://med.stanford.edu/tass-lab.html
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If you want to know where to start in addressing your PD symptoms then this is the place and the video to start with.
Dr. Mischley gives us a roadmap to what successful people do, linking topics that many of our previous world-leading speakers have spoken to us about before.
Much of the session focuses on The Parkinson Symptom Tracker (PRO-PD App) designed as a tool for assessing and tracking symptom severity over time. It is freely available on the iOS and Android app stores.
For more information: see https://pd-symptoms.com/ and watch this video by Dr. Mischley https://www.youtube.com/watch?v=5tx8rNBWx4M
If you are interested in participating in research (~ 3 hours per year answering online questions), please consider participating in the ongoing Modifiable Variables in Parkinsonism Study: https://mvp-study.com/
About the speaker:-
Dr. Laurie Mischley is a naturopathic physician and researcher specialising in the treatment and management of Parkinson's disease (PD). With over 20 years of experience in the field, she has become a leading expert in the use of natural therapies for PD.
Dr. Mischley studied naturopathic medicine (ND) at Bastyr University and epidemiology (MPH) and nutritional sciences (PhD) at the University of Washington. Her work is focused on identifying the nutritional requirements unique to individuals with PD. She has published on coenzyme Q10, lithium, glutathione and mitochondrial deficiency in PD. She is Principal Investigator of the Modifiable Variables in Parkinsonism Study (mvp-study.com), which is attempting to describe why some people with PD progress slower than others.
Dr. Mischley is working on ways to study, package and deliver evidence-based lifestyle modification as a therapeutic strategy. She founded the canine scent-based PD screening tool, ParK-9, developed a patient-reported outcome measure to assess PD severity (PRO-PD) and is instructor of the online series Parkinson School: https://pd-school.teachable.com/
Dr. Mischley maintains a small clinical practice at Seattle Integrative Medicine focused on nutrition and neurological health.
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We are all becoming very aware of the huge benefits of exercise with PD but where do you start and what do you need to do?
Julie Jones is a very experienced physiotherapist with a specialist interest in Parkinson’s and so is perfectly qualified to guide PwP to get more active and feel the benefits of exercise. This is an excellent and natural follow-up to the presentation by Prof Bas Bloem, also available on this channel and highly recommended if you have not watched it.
If you would like a copy of Julie's slides then please email us at [email protected]
Julie is a clinical academic fellow, jointly funded by Parkinson’s UK and the Chief Scientist Office and is a senior lecturer at Robert Gordon University. She is also a member of the Strategy Advisory board of Parkinson’s UK in Scotland and chairs the Scotland wide Parkinson’s Active project. She is also a member of the Parkinson’s UK College of Experts grant review panel, and sits on the Research Participation Steering Group at Parkinson’s UK. Within the Parkinson’s Excellence Network, Julie is the co-lead of the Exercise hub, which runs education events to support exercise professionals nationally to improve and develop service provision for people with Parkinson’s.
Julie’s current role spans research, clinical and academic. Julie is currently funded to explore the feasibility and acceptability of a multicomponent intervention designed to support physical activity participation among people with Parkinson’s. Julie has an honorary physiotherapy position within NHS Grampian, and her main clinical interests include exercise and gait dysfunction.
Julie can be contacted:-
The Robert Gordon University email [email protected]
Julie was the keynote speaker in 2022 at The Edinburgh Parkinson's Lecture
• Edinburgh Parkins...
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We are delighted to bring you Dr. Rick Helmich on the topic of "Managing stress with Parkinson's"
Dr. Rick Helmich was recommended to us by Prof Bas Bloem, who considers Rick to be the leading authority in this field. Rick will be discussing stress (both acute and chronic) and the effect that this has on people with Parkinson's disease.
Rick's passion is to understand the cerebral mechanisms that lead to neurological diseases and use these insights to develop new therapies for patients with movement disorders. Rick works as a neurologist and associate professor specialising in Parkinson’s disease and tremor disorders at the Radboud University Medical Centre (with Prof Bas Bloem) and at the Donders Institute, both in the Netherlands.
Rick is very much inspired by clinical observations in patients and uses neuroimaging and neurophysiology to understand the underlying mechanisms. He is particularly intrigued by the profound effects of psychological stress on many neurological movement disorders, by the way patients can compensate for brain dysfunction, and by the different ways in which tremor can manifest itself.
Rick discusses:-
1) What is stress?
2) Can stress cause Parkinson's?
3) How does stress influence Parkinson's?
4)What can we do about it?
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Dear Friend,
We are thrilled to announce the launch of a new YOPN Podcast, featuring an inspiring story about two of our very own co-founders of NoSilverBullet4PD, Michel Planquart and Mark Limebear.
Through this podcast, you can discover how their friendship and shared experience of living with Parkinson's disease led them to create a community of support and understanding for those living with the condition.Whether you are living with Parkinson's disease, or know someone who is, this podcast is for you. Listen in and learn how their story of resilience and hope has made a profound impact on so many lives. It's a powerful reminder of the strength that comes when people come together and support each other.
YOPN is Young-onset Parkinson's Network https://www.yopnetwork.org/
Please share, thank you -
Listen to this excellent presentation with a very good Q&A at the end, of Dr. Matthew Phillips exploring the potential therapeutic benefits of metabolic strategies, particularly fasting and ketogenic diets, in neurological disorders.
Matt is a clinical and research neurologist at Waikato Hospital, Hamilton, New Zealand. His foremost passion is to explore the potential feasibility, safety, and efficacy of metabolic strategies, particularly fasting and ketogenic diets, in creating alternate metabolic states that may benefit people with a variety of neurological disorders. His team conducted the world’s first randomized studies involving only people with Parkinson’s, followed by Alzheimer’s.
Further resources:-
Metabolic Strategies in Healthcare paper
https://www.ncbi.nlm.nih.gov/pmc/arti...
Parkinson's RCT
https://movementdisorders.onlinelibra...
Metabolic Plan (click Resources)
https://www.metabolicneurologist.com/
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Dr. Simon Stott talks to us about his main PD research takeaways from 2022 and the research results he will be looking for in 2023.
Simon is the Director of Research at Cure Parkinson's. The trust is an international supporter of both lab- and clinic-based research on Parkinson's.
Originally from New Zealand, Simon has more than 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.
https://scienceofparkinsons.com/about/
Twitter:- https://twitter.com/ScienceofPD
Cure Parkinson's Trust:-
https://cureparkinsons.org.uk/ambroxo...
Twitter:- https://twitter.com/CureParkinsonsT
PD Frontline:- https://pdfrontline.com/en/ambroxol
IF YOU CAN, PLEASE DONATE TO NO SILVER BULLET 4PD.
We are self-funded, so pay for our costs ourselves, which include licenses for our secure Webinar platform, our Podcast hosting platform and soon-to-be-launched paid advertising on Facebook and Instagram so that we can target and share these sessions with more PwP worldwide, in the hope that some of our speaker's content, may improve the symptoms of another PwP
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https://www.paypal.com/donate/?hosted... - Näytä enemmän
