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If You Registered For The MJFF Webinar Reviewing PD Research, Did You Receive The Booklet That Gives An Overview Of The Webinar's Content?

A MyParkinsonsTeam Member asked a question 💭
Burlington, KY

I received this booklet yesterday and I'm pleased with the content. If you did not get it, perhaps you can request it on their website.
Maria

November 9, 2023
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A MyParkinsonsTeam Member

Hi PD Friends, For those of you who have not registered or received the booklet in the mail, here is a brief description of its content. Hope this is helpful in advance of the Nov webinar.
- A year like no other:
There are nearly 200 active trials testing different therapies. 16 target the pathology of alpha-synuclein known to be linked to Parkinson's
- The new biomarker validated in April 2-23 (qSyn-SAA) that detects the misfolded alpha=synuclein protein makes it possible, for the first time, to confirm PD biologically, in living people even before symptoms begin.
- This biomarker may unlock and accelerate the promise of more targeted treatments for all stages, earlier intervention and potentially prevention.
- 2023 will experience the launching of the PPMI initiative that is a global coalition of government, industry and private partners launching a first time staging framework based on Parkinson's biology instead of subjective clinical features.
- Methods used in Alzheimer's and Creutzfeldt-Jakob were applied to PD and the assay confirmed the presence of abnormal alpha-synuclein in 93% of people with Parkinson's.
- Samples from volunteers in the PPMI study who were not yet diagnosed with PD but exhibiting at risk factors showed pathology that could result in earlier intervention and possibly prevention.
- aSyn-SAA is proving transformative for research by informing and shaping better and faster trials.
- further research is designed to develop testing that can be done on blood rather then spinal fluid. Also testing needs to be quantifiable so the protein would not just be detected but measured.

Imaging:
Research is on-going to develop imaging that can visualize alpha-synuclein in the living human brain. MJFF is supporting development of a PET tracer that can isolate images in the brain.

Better Therapeutics:
- Alpha-synuclein allow for enrolling only participants who have dysfunctional biology in their brain and body cells. and this allows for the opportunity to definitively understand if experimental drugs are having the intended effect.
- Dopamine: People with PD can look forward in coming months
to new options for treating symptoms with s many as 5 new drugs that increase dopamine levels, are easier to take and last longer.
- LRRK2 and GBA: genetic variations in these 2 genes are linked to PD. Drugs targeting LRRK2 could slow or stop disease progression.
- GLP1 is a receptor agonist may be effective in PD because of their ability to travel to the brain and protect cells from neurodegeneration. These drugs were approved for diabetes treatment and may not be safe for people with PD so consultation with a doctor is necessary.
- Stem Cells: Efforts are underway to find the role of stem cells in replacing natural brain cells lost in PD with neurons engineered from stem cells.
There are also efforts to coax the brain to heel itself with healthy stem cells.

This is exciting stuff!!!
Maria

November 9, 2023
A MyParkinsonsTeam Member

Shannan, Perhaps we could be a monitor for each other's worry wheel. You certainly can come back to this well anytime you need a refill and thanks for always being there to refill other's cups.
Maria

November 10, 2023
A MyParkinsonsTeam Member

Yes, funny after you posted, I had an email that detailed the information to be discussed. I’m trying to convince my dad to do the genetic test. I’d like to know if he has it or not so I could be proactive. We don’t know of anyone else in our family history w PD. Anyhow, learning and staying current w the updates keeps me motivated and hopeful for my dad and hubs. It’s too easy to slip into my head and fill up my worry wheel as I call it.
Many thanks for all that you share!
❤️

November 10, 2023
A MyParkinsonsTeam Member

Hi Shannan, I am part of the PPMI study but they have enough folks with PD so I only contribute data at this point. They are still recruiting those with risk factors but no symptoms. I don't have the biomarker either so I wonder about the PD diagnosis but I guess I'll learn more as this and other studies progress.
I do find this info exciting though. Looking forward to the webinar.
Maria

November 9, 2023
A MyParkinsonsTeam Member

Oh wow!!! This really sounds promising and give me hope that more treatments are forth coming. Part of the trial my husband will be participating in requires the spinal fluid sampling. He did the genetic testing but he didn’t have the bio marker.
Thanks as always for keeping us updated with the most recent research and information available. You are gift to our team!
😊Shannan

November 9, 2023

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