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Our Next Meeting
Tuesday March 16th 7:00 PM

Parkinson's Support Group for People with PD and Care Partners
Topic: Parkinson's Plan of Action 

Scheduled for upcoming meetings 

We have a great lineup of guest speakers for our upcoming meetings. The first 30 minutes of our meetings will involve a speaker and the second half will be for support and networking.

We are going to devote one meeting a month for those from our Shaker's Anonymous members who would like to "share your story", inspire others or lead a discussion on a topic of interest. email hagerbrant@gmail.com
Tuesdays at 7:00 PM

March 23rd: David Levkovich, PT DPT - Owner and Director of Physical Therapy Customized Parkinson’s Exercise and Wellness Program” a panel discussion including Physical Therapists, Personal Trainers, Pilates/Yoga instructors and of course Rock Steady Boxing coaches to do a presentation followed by a Q and A. 
 

March 30th: Amy B Scher, is an energy therapist, expert in mind-body healing, and the bestselling author of How to Heal Yourself When No One Else Can. 
https://www.eomega.org/workshops/teachers/amy-b-scher
https://www.soundstrue.com/blogs/authors/amy-b-scher
 
April 6th: Care Partner Support Group Meeting with Jay Stratoudakis
 
April 13th:
Lori Quinn, EdD. PT Topic: Parkinson's Physical Activity / Coaching Program, 

April 20th: Parkinson's Support Group for People with PD and Care Partners

April 27th Dr. Soania Mathur, BSc, MD, CCFP,UnshakeableMD, MJFF Patient Council co-chair; co-founder PD Avengers soaniamathur@unshakeablemd.com
 
May 4th Care Partner Support with Jay Stratoudakis
 
May 11th TBD
 
May 18th Persons w/PD + care partners support group
 
May 25th Nancy Lombard, SW Ct Dept of Aging
 
June 1st Care Partner Support with Jay Stratoudakis
 
June 8th Nancy Lombard , SW CT Dept of Aging
 
Parkinson’s Body and Mind Program
Revised COVID Safe  Greenwich YMCA

 
Please note that given the current environment of people still receiving their vaccines, we continue to run all PD classes free of charge until  APRIL 1st .
 
The boxing track and padded mats will be in place by the middle of the month, at which time we will share some exciting visuals of this new space along with the Parkinson’s team here at the YMCA.  We can’t wait to welcome this group back into the Y!

 
All of these classes are offered both live @ YMCA (in studio AS1) and VIRTUAL.

You can call the 
Member Services Team at (203)869-1630 to reserve spot or if you have any questions about registration for classes. 


Our goal is to deliver safe programs that re-engage and re-connect members of the Parkinson’s community as it works best for each individual.

Our current schedule is as follows:
 
Monday:           Rock Steady Boxing w/Toni @ 10:00am
Wednesday:     Rock Steady Boxing w/Toni @ 9:00am

NEW Thursday: Tai Chi  w/Ken starting 4/1 @ 11 am
Friday:              Yoga w/ Francesca @ 10:00am
 
 
Zoom in and try the class free. Call member services at (203)869-1630 for the link.

Registration
All participants must register for the class via the YMCA of Greenwich App click here for Apple or here for Android or you can call the Member Services Team at (203)869-1630 to reserve spot or if you have any questions about registration for classes.
 
Tai Chi with Ken Dolan is back at Cos Cob Park on Monday, March 29th at 10 AM, for $12 each class.
We want to know if 8:30 am or 10am would be preferred for the class? RSVP Debbie Silverthorn
  
debrasilverthorn1@gmail.com


Roger Sherman Baldwin Park 100 Arch St Greenwich
 
Ken began studying TaiChi/Qigong in 1996. He has been teaching regularly scheduled TaiChi/Qigong classes in the Stamford-Greenwich area for 13 years as well as private sessions. He also co-teaches a stress management class at the Bennett Cancer Center. His classes emphasize relaxing with focused breathing and coordinated movement.
 
Studies have shown that TaiChi improves balance and motor control in Parkinson”s disease. 

No charge for trying out a class! For those who want to pay, suggested amount is at least $10 per class. 

If interested in attending please email Lynn at hagerbrant@gmail.com

Francesca Conway's Yoga for Parkinson's 
Tuesday and Thursday at 10 AM  

Join Zoom Meeting
https://us02web.zoom.us/j/3901405312?pwd=QUVTTzM3LzN5OTQ2ZlFYTld6dnRaUT09

Meeting ID: 390 140 5312
Passcode: 321096 (NEW )

Classes are free - Donations are welcome
Venmo: @Francesca-Conway-1 PayPal: nicole3@optonline.net

LET’S SHOW THE WORLD WE GIVE A DIME ABOUT PARKINSON’S.

 

RED CARD CAMPAIGN AND LIVE EVENT
MARCH 16, 2021 - 12 PM ET



 

It’s not too late to register for next week’s episode of Dr. Gilbert Hosts where APDA’s Chief Scientific Officer Dr. Rebecca Gilbert will speak with special guest Dr. Clemens Scherzer for an interesting conversation about Genetics & PD. Dr. Scherzer will discuss his innovative research, address many of the fascinating issues about genetics as it relates to Parkinson’s Disease (PD), and answer your questions live during the program. Simply click the green button below to reserve your spot!

If you’re not familiar with the program, Dr. Gilbert Hosts is a monthly interactive webinar series where Dr. Gilbert speaks with experts in the PD community and opens the conversation up to your questions. We hope you’ll join us!

Dr. Gilbert Hosts: Genetics & PD with Dr. Clemens Scherzer

Wednesday, March 17, 2021

12:00 PM ET
 

 
REGISTER TODAY!
 


What’s New in Deep Brain Stimulation
 
The idea of brain surgery can seem frightening. But for many with Parkinson’s disease (PD), deep brain stimulation (DBS) is a procedure that can have a significant positive impact on their quality of life. It’s important to note that it cannot help everyone with PD, and it may not be the right choice for you or your loved one for a variety of reasons – but APDA has a wealth of resources to help you learn more and answer many of your questions.
 
What is DBS? DBS is a surgical procedure in which thin electrodes are implanted into parts of the brain that control movement, with a goal of reducing tremor, off time or dyskinesias, and potentially improving quality of life. As mentioned, DBS can make a substantial difference for some people living with PD, but it comes with many questions – who is best suited for the treatment? Is it only for people with advanced symptoms? What are the risks? What can I expect during and after a DBS procedure?
 
Whether or not to proceed with DBS is a decision only you and your medical team can make, based on your specific situation. We hope the resources below will help you learn about the procedure, the pros and cons, and some of the important questions to ask so you can have a productive conversation with your doctor, should you choose to do so.
 
Advances in DBS:  In this recent edition of Dr. Gilbert Hosts, we speak to Dr. Alan Mogilner, an expert in DBS, about the most recent advances in DBS technology.
 
The ABCs of DBS: In this webinar, you’ll learn what DBS is, hear more about who is a candidate for deep brain stimulation, what’s new in the field as it relates to DBS, and more.
 
Overview of DBS: This fact sheet is a quick and easy starting point – a great way for you to learn more and get reliable information about DBS treatment.
 
Updates on PD Treatments, including DBS: A recent webinar in our “Spotlight” series, Spotlight on Parkinson’s Disease: What’s New in PD Treatment reviews the latest in all PD treatments, including developments in DBS treatment.
 
DBS Research to help gait and balance: APDA-funded researcher Dr. Aasef G. Shaikh is working hard to develop a DBS-based therapeutic approach to improve balance, gait and postural instability in PD. Learn more about his exciting research (that even uses a machine used by NASA to train astronauts!) and what fuels his passion for his work.
 
We encourage you to share these resources with your friends and family who might benefit from learning more.
 
Here are a few exciting programs coming up soon (check our virtual events calendar for a full listing):
 
March 17, 1 p.m. ET: Dr. Gilbert Hosts with special guest Dr. Clemens Scherzer. Expert discussion and live Q&A about genetics and PD!
 
March 22, 1 p.m. ET:  Spotlight on Parkinson’s Disease: Searching for Ways to Stop Disease Progression Expert perspectives on promising therapies in development to address disease progression -- with an extended Q&A session!
 
March 25, 1 p.m. ET: Let’s Keep Moving with APDA: Movement & Speech Experts in physical therapy and speech therapy will discuss the connections between movement and speech, and answer your questions live during the program.
 
Parkinson's Foundation

Join us next week for New Frontiers in Research and Care – Westchester County and beyond, a free online event for people with Parkinson’s and their loved ones. Learn about the Parkinson’s Foundation latest research initiatives, including PD GENEration: Mapping the Future of Parkinson's Disease.

This program is open to people with Parkinson's, their family, friends and the community.

Register Now


What: We will learn about how research has shaped current treatments and identify new care strategies to help with managing Parkinson's symptoms.

Who: Our speakers include:
– Susan Bressman, MD at Mt. Sinai Union Square, Parkinson’s Foundation Center of Excellence
– Rachel Saunders-Pullman, MD, MPH, MS at Mt. Sinai Union Square, Parkinson’s Foundation Center of Excellence
– Deborah Raymond, MS, CGC at Mt. Sinai Union Square, Parkinson’s Foundation Center of Excellence

When: Thursday, March 18, 2021; 1 p.m. to 2 p.m. ET

Where: Online Zoom Meeting. Once registered, you'll receive an email giving you the link to watch the program on the date and time written above.

How to attend: RSVP now at parkinson.org/Westchester. This is a free event, but registration is required.

For more information, contact Nancy Nealon at (585) 234-5355 or nnealon@parkinson.org.

     
 
     
  March 9, 2021  
     
     
 
Register Today for the WPC Research Spotlight with Professor David Finkelstein, Dr. Leah C. Beauchamp, Professor Kevin J. Barnham

Date: Tuesday, March 23, 2021
Time: 4 - 5PM EDT/ 8 - 9PM GMT*/ (7AM AEDT March 24 in Australia)
WPC Blog post: The COVID-19 Pandemic Doesn't Smell Right
(*Daylight savings starts in the North America)

 
REGISTER HERE 

This Research Spotlight with Professors  Finkelstein, Barnham, and Dr. Beauchamp, will take a deep dive on their recent research on COVID-19 and implications for Parkinson's. 

In their work, published in 2020 in the Journal of Parkinson's Disease, demonstrated olfactory impairment in 75% of patients infected by the SARS-CoV=2 virus. Loss of sense of smell is an indicator of nervous system involvement and a 'red flag' for neuroscientists who see anosmia (inability to smell) as one of the first non-motor symptoms of pre-clinical Parkinson's disease. While there is no evidence that viruses cause Parkinson's there is a hypothesis that a virus could cause inflammation in the brain, which could prime it and make it more susceptible to neurodegeneration. The findings of their work is preliminary and needs further investigation. Until further is known, their work is a clarion call for vigilance in the neurology community to watch this virus closely and for governments to invest more funding of research for neurodegenerative diseases like Parkinson's in order to prepare for a possible increase in cases in the coming years.
 
__________________________________________________
 
     
 

Did you miss our first Research Spotlight of the year? 

You can still watch it!

Listen to Professor Roger Barker interview Professor Miquel Vila and Dr. Ariadna Laguna discussing the research on neuromelanin that they wrote about in their blog post "'The 'Black Stuff' and Parkinson's Disease."

 
     
     
  Watch the Research Spotlight with Miquel Vila
Beginning life with Parkinson’s at the age of 46

Tim courageously show us what goes on within the mind of a nurse who is diagnosed with Parkinson’s in mid-life.

Tim Hague Sr. is a registered nurse by day (pay check) and a professional speaker and writer the rest of the time (passion). He overcame the odds when he went from a diagnosis of Parkinson’s disease to — just three years later — becoming the inaugural winner of CTV’s The Amazing Race Canada. He believes that, like many others who suffer with a myriad of other ailments, we can live to our fullest when we choose to persevere.

Neurodegenerative Disorders Research
Clinical trials at the Department of Neurodegenerative Disorders at Weill Cornell Medicine.
 
Therapeutic
Early PD-Disease Modifying SPARC A double-blinded study to determine the ability of a study drug, K0706, to slow down the progression of Parkinson’s disease, as well as the safety of K0706.
Age: 50+
Study Period: 44 weeks
  • PD diagnosis within 3 years of Diagnosis
  • Naïve to Dopaminergic agents within 9 months of first visit
  • Some imaging, and specimen collection
Symptomatic PD on Meds RESTORE
A study is to evaluate the durability of the effectiveness and safety of a study drug called droxidopa in people with symptomatic neurogenic orthostatic hypotension (NOH)
Age: 18+
Study Period: 36 weeks
  • NOH with PD
  • No medication requirement
  • Must be able to stand
  • No imaging; Specimen Collection
NEURODERM
A double-blinded study to determine the effects of study infusion drug, ND0612, on Parkinson’s disease to limit time spent in the off state.
Age: 30+
Study Period: 40 weeks
  • Diagnosis of Parkinson’s disease with significant amounts of off time
  • Must have 4 doses per day of Levadopa (at least 400 mg/day) or 3 doses/day Rytary
  • Some specimen collection
Observational Studies
Mild, Moderate, and Advanced PD ATLAS A longitudinal study that investigates the changes in the symptoms and progression of Parkinson’s disease.
Age: 30-70
Study Period: 3 years
  • PD diagnosis within 3-12 years
  • One or more dopaminergic agents and/or amantadine
  • Some imaging, and specimen collection
IRONMAN
A longitudinal study to establish a noninvasive imaging method for measuring and quantifying iron changes in the brain of subjects with PD or REM Sleep Disorder.
Age: 30 to 100 Study Period: 2 years
  • PD diagnosis
  • One or more dopaminergic agent or naïve
  • Some imaging and specimen collection
Neurosurgical
EXABLATE
A study to show that Exablate, a MR-guided Focused Ultrasound, is safe and works to destroy a small cluster of cells that are likely associated with your PD motor symptoms.
Age: 30+
Study Period: 12 months
  • PD diagnosis
  • Responsive to LDopa
  • Some imaging and specimen collection
  • A surgical procedure where patients will receive either the Exablate or sham
Precision Medicine
GBA1 Genotyping
A study to identify individuals with the GBA mutation so that they may enroll in surgical clinical trial called PREVAIL.
Age: 40 to 75
Study Period: One time visit (30-45 minutes)
  • PD Diagnosis
  • No medication requirement
  • Willing to provide blood sample, ambulatory, living within the community
  • Blood collection
PREVAIL
A double-blinded study to determine the effects of gene therapy product, PR001A, on Parkinson’s disease, specially the GBA mutation.
Age: 40-75
Study Period: 5 years
  • Diagnosis of PD with a GBA1 mutation
  • No medication requirement
  • Some imaging and specimen collection
  • A surgical procedure to administer PR001A or placebo
Light Therapy
ENLITE PD
A blinded study to asses light therapy’s effect on sleep problems due to Parkinson’s disease.
Study Period: 16 weeks
  • Diagnosis of Parkinson’s disease
  • Regular Work Schedule or retired with minimal travel
  • Significant sleep problems due to Parkinson’s disease
Technology Studies
MYCAP
A study to test whether active tasks completed on a personal smartphone are effective as a measure of collecting data from patients with Parkinson’s disease.
  • No age criteria
  • Can be a healthy control or diagnosed with Parkinson’s disease
  • Must have an iPhone
DBS PKG
A study to test the Personal Kinetigraph (PKG) measurements in patients with Parkinson’s disease who undergo DBS surgery both pre- and post-operatively.
Age: 30 to 85
  • Diagnosed with Parkinson’s disease
  • Pre-operatively
    • Must qualify for DBS
    • Study Period: 12 months
  • Post-operatively
    • Previous DBS settings and meds stable
    • Study Period: Wears the PKG once for a period of 6 days
Online Studies
TOPAZ
A study to test the efficacy of the study drug: Zoledronic acid-5 mg, in Parkinson's disease (PD) subjects.
Age: 65 years or order
  • Parkinson’s disease diagnosis
  • Willing and able to continue in follow up for 5 years
  • Study Period: assessments and visits are remote and/or online.
Contact Information
If you are interested in any of these clinical trials, please contact the research team: 
 
MJFF Media Monitoring - March 12, 2021

Michael J. Fox Foundation coverage    
U.K. Researchers Progress Toward Simple Skin Swab Test for

Parkinson’s Disease
 [Genetic Engineering and Biotechnology News – March 12, 2021] 


Cambridge Sleep Sciences’ Device is Trialed in 

Parkinson’s 
[PharmaPhorum – March 12, 2021 – By Phil Taylor] 


Simple Skin Test Spots Parkinson’s Disease [The Times UK – March 12, 2021 – By Kate Gibbons] 
 

Parkinson’s disease coverage      

Having Rheumatoid Arthritis Appears to Lower Your Risk of Parkinson’s [Parkinson’s News Today – March 12, 2021 – By Aisha I. Abdullah, PhD] 

Centogene Enrolls 10K in ROPAD Genetics Study [Parkinson’s News Today – March 12, 2021 – By Diana Campelo Delgado] 

Scientists Develop Quick “Game-Changing” Test to Diagnose

Parkinson’s Disease 
[The Swaddle – March 12, 2021 – By Satviki Sanjay] 


Energy Deficiency in Brain Cells May Up Parkinson’s Risk [The National Herald India – March 10, 2021] 

AD/PD 2021: Impact of COVID-19 on Neurodegenerative Diseases [Pharmaceutical Technology– March 12, 2021] 

‘Game-Changing’ Swab Test Could Revolutionize Parkinson’s Diagnoses [BBC Science Focus – March 11, 2021 – By Jason Goodyer] 
 

 
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