3,362 PD Avengers 65 Countries 55 Partners
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PD Avengers,
This Action Alert comes on the heels of a very successful Parkinson's Awareness Month. The amount of advocacy, collaboration and media that we were able to generate is unprecedented. Bravo!
Parkinson's doesn't let up, so neither can we.
A couple important notes in this issue:
- A historic meeting about Parkinson's hosted by the World Health Organization (WHO)
- World Parkinson Congress virtual is upon us.
- PD Avengers spotlight Women & PD
- Another PD Avengers ASSEMBLE! is coming up on May 25th
Thank you for being a PD Avenger and for recruiting your family, friends and medical team to do the same.
We are 3,362 members strong from 65 countries and we have more than 55 partner organizations and events.
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A great video animation introducing new PD Avengers from the online Spanish speaking PD community for women:
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Upload your PD Avengers Video Here and we'll add it to our growing list of "Why I am a PD Avenger" videos.
Subscribe to our You Tube channel!
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#1 Register for World Parkinson Congress Virtual -- become a more informed PD advocate
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The WPC Virtual: Advancing Science, Care, & Living with Parkinson’s online congress will take scientific updates and connectivity to a new level. We are thrilled to announce this first ever virtual Congress from the WPC that will rival the quality and content of what we offer in person.
Program dates: Monday - Friday, May 17 - 21, 2021.
Topics presented during this five-day virtual program will include updates on: Basic Science, Clinical Science, Treatment Options, Comprehensive Care, and Living with Parkinson’s. The program will also include two 4-part wellness series as part of the week, looking at PT wellness and Speech/Voice wellness. Talks will be forward thinking and delivered by both well recognized and up and coming leaders in the Parkinson’s space.
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#2 Former NBA Star is a PD Avenger
Please share this video and make your own!
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** TODAY! May 12 6pm
An evening with Brian Grant & Friends...
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#3 Get involved in research! |
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Almost every day online you will read someone wondering aloud "Why isn't there more research on...(fill in the blank area of PD)?" Sometimes it's a money issue, but often times researchers cannot find enough volunteers from different genders, age groups, races, ethnicities, cultures or locations.) Before we begin banging the drum that research is woefully lacking, people with Parkinson's need to volunteer for studies. Without us, the research cannot be completed.
There are many ways to get involved in Parkinson's research whether you have Parkinson's disease or not.
One of the easiest studies to begin with is Fox Insight. It's COVID-19 friendly, because you complete from the comfort of your couch.
Our online clinical study collects self-reported data to learn more about life with Parkinson's.
- People with and without the disease can participate
- Complete online questionnaires
- Add your genetic data to the study and access the 23andMe Health + Ancestry Service at no cost (U.S. participants with Parkinson's only)
If you are looking for trials that are near you or are targeting your symptoms...
Our revamped user-friendly online matching tool helps you find observational studies and clinical trials in your area.
- People with and without Parkinson's can participate
- Review studies that match your location and traits
- Securely connect with researchers
- Sign up for emails about new trials through iConnect
And finally the PPMI 2.0 is recruiting for volunteers
Our landmark study seeks to transform how we diagnose, track, treat and potentially prevent Parkinson’s disease.
- People with and without Parkinson’s may be eligible
- PPMI also is recruiting first-degree family members (parent, child, sibling) of a person with Parkinson’s
Cure Parkinson's focuses on research with the potential to cure Parkinson’s. They fund clinical trials and preclinical work which seeks to open up new avenues in the search for a cure. There are many ways to get involved in research, whether that’s taking part in a trial, completing a survey, joining a study or sharing your experiences to help shape research.
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Take part in research - Cure Parkinson's
Find studies recruiting We fund and support clinical trials which seek to slow, stop or reverse Parkinson's. Find out about the trials which are recruiting as part of our International Linked Clinical Trials (iLCT) programme developed in...
Read more
cureparkinsons.org.uk
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Here is a Research Opportunity... for US Citizens. |
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#4 READ / WATCH / SHARE:
Parkinson's featured on world stage!
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On April 14 and 15, Dr. Ray Dorsey, Dr. Natasha Fothergill-Misbah, Ted Thompson and Larry Gifford were four of thirty people worldwide invited to participate in a Parkinson's workshop with the World Health Organization. In the video below, they debrief the PD Avengers and Partners on the two day, historic workshop, hosted by World Health Organization (WHO). The aim to give you some insights into the two-day session. More details in the Michael J. Fox Foundation blog entry.
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MJFF Attends Parkinson's Meeting with the World Health...
Earlier this month, The Michael J. Fox Foundation for Parkinson's Research (MJFF) attended an important (virtual) meeting with the World Health Organization (WHO) to talk about Parkinson's disease. This is the first time in over two decades that...
Read more
www.michaeljfox.org
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In the month of April, we added a question to our PD Avengers sign-up:
"How did you hear about PD Avengers?"
The top answer was overwhelmingly referrals from friends and family "my friend" or "my Mom." We ask that each PD Avenger and Organization try to recruit five PD Avengers each month. We want to recognize those of you who reached that goal in April! We've listed names and (Number of people who mentioned they heard about PD Avengers from that source)
*To update your PD AVENGERS PROFILE look at the bottom of this email for a small link called "Update Profile."
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THANK YOU!
Parkinson Canada (16)
Miriam Bram (15)
When Life Gives You Parkinson's Pod (15)
Con P de Párkinson & Paqui (8)
Steve and Jean Moody (7)
Gil Thelon (7)
APDA (6)
PMD Alliance & Indu Subramanian (6)
Parkinson Society of Southwest Ontario (5)
Parkinson UK (5)
Liz Holroyd (5)
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Every recruit is valuable, so want to also thank the following people and organizations who inspired others to become PD Avengers: PD UK, Jillian Carson, WPC, Antony Rose, Cure Parkinson's, Can't Shake Me Foundation, Paul Cluff, Stephen Davies, Rob Warner, Shepherds, Tim Weymouth, Rock Steady Boxing, Richard Underwood, PWR Conference, PFWPA, PD Warriors, Parkinson's Place, Mark Needles, Helen Matthews, Jon Pawelkop, Stronger Than Parkinson's Disease - Romania, Allan Cole, EPDA, Marc, Rachel Lee, Jon Collins, Michael Okun, MD and Mom's everywhere. |
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PD AVENGERS FOCUS: Women and PD
The issues and complications around Parkinson's disease and YOPD women has been a whispered topic for decades. That whisper has become a roar.
Following a report on women and PD at the World Parkinson Congress in Kyoto by the Parkinson Foundation people began to take notice.
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PD Avengers Championing 'Women and PD' - PD Avengers
The International Women's Day 2021 theme this year was about #ChooseToChallenge to challenge and call out gender bias and inequality. With the sentiment that 'From challenge comes change'. One the PD Avengers founding members, Richelle Flanagan,...
Read more
www.pdavengers.com
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Topic: PD Avengers Bi-monthly Meeting hosted by PMD Alliance to help increase capacity. Room for 300 participants.
Time: May 25, 2021 11:00 AM Pacific Time (US and Canada) / 1800 UTC
Every 2 months on the Fourth Tuesday
Join Zoom Meeting
Meeting ID: 946 2618 3378
Passcode: 298297
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CHECK THIS OUT!
PMD Alliance Book Club: Ending Parkinson's Disease
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Book Club: Ending PD Now
Calling all readers, researchers, advocates, and people impacted by Parkinson’s disease! You’re invited to a book club featuring Ending Parkinson’s Disease: A Prescription for Action. Join us for a four part mini-series with the authors...
Read more
www.pmdalliance.org
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Sleep well
If you've got Parkinson's disease and find it difficult to get to sleep, or stay asleep, you're not alone. 90% of people living with the condition are similarly affected. Identifying the root causes of sleep problems are the first steps to...
Read more
www.epda.eu.com
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The EPDA asked PD Avenger Matt Eagles to talk about what it is like to sleep with a movement disorder. |
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Please go to our Partner Page and click on the logos and visit their websites to discover amazing events happening everyday around the world.
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