PD Avengers
News & Updates
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Hello PD Avengers,
Thank you for telling your family and friends about PD Avengers. We are now more than 6,335 members strong representing 93 countries. We also have 120 partner organizations.
This month's action alert focuses on how you can participate in Parkinson's Awareness Month (APRIL) and World Parkinson's Day (APRIL 11). Additionally, a new article in the Journal of Parkinson's Disease contends Trichloroethylene (TCE) just may be an invisible cause of Parkinson's. We also share a new article from PD Avengers Women and PD Working Group and you can vote for the WPC2023 video finalist that you believe should win the "People's Choice" award.
We always like to remind you to visit our website as it is update through the month. Our partner page is newly designed by categories. We are also rolling out a resource page for free, online wellness classes. (Sneak Peek)
If you are planning to join us at the World Parkinson Congress in Barcelona, we do need volunteers to help work the PD Avengers booth. Please contact me directly [email protected]
Please follow us on YouTube, Linked In, Facebook, Twitter and Instagram.
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The best way to support PD Avengers is to follow this link to our partners at Mediflix.
Visit the PD Avengers page on the @Mediflix website and it will donate funds to PD Avengers. The sooner you sign up and the more often you visit, the better for you...and the more funds PD Avengers will receive.
Please click https://conta.cc/3HfAbXt
Thank you for sharing your stories, advocating and raising awareness of Parkinson's disease. Please tag PD Avengers in your Parkinson's Awareness activities.
United to End Parkinson's,
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Larry Gifford
President & Cofounder
PD Avengers
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Parkinson's Awareness Month
APRIL
World Parkinson's Day
APRIL 11
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HISTORY OF WORLD PARKINSON'S DAY
The first World Parkinson's Day (WPD) was held in April 1997.
It was set up by the European Parkinson’s Disease Association (now known as Parkinson’s Europe) and co-sponsored by the World Health Organisation (WHO).
The date commemorates the birthday of Dr James Parkinson.
READ MORE
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PARKINSON'S EUROPE ONE QUESTION SURVEY
Would you like to see World Parkinson’s Day officially recognised and observed as a global health day?
Click here to show your support
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World Parkinson’s Day...
- Unites those touched by Parkinson's around the world to highlight the impact Parkinson's Disease has on individuals, families and communities
- Celebrate the fantastic work that people with Parkinson's, and those working in the field, are doing to manage and raise awareness of the disease
- Salute the resilience and strength of people who live with the condition every day
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All April long we encourage you to share THE SPARK! | |
THE SPARK IS OUR BOLT OF ENERGY AND INSPIRATION FOR THE GLOBAL PARKINSON'S COMMUNITY. | |
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The spark is inspired by the electrochemical neurotransmitter, dopamine, which is key to motor function, mood and decision making. It is critical for people with Parkinson’s to retain it – and devastating when depleted.
We are reclaiming the spark as our source of energy and inspiration.
We’re asking all those impacted by this disease to share their spark and join us in standing up so we can end this disease.
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The dedicated website for World Parkinson's Day and to access all the assets to create, customize and share your personal SPARK is www.WorldParkinsonsDay.com.
We also are adding new features including a GET INVOLVED Page and a Get Your SWAG On page where you can purchase t-shirts, hats or stickers for Parkinson's Awareness. (Pages will be active soon!)
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VIDEO: APRIL EVENTS AND ACTIVITIES
For Parkinson's Awareness Month and World Parkinson's Day
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A Growing Guide of
Parkinson Awareness Month Activities
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APRIL 1-30 - Spread the Spark! | |
APRIL 3-10 - Dopamine Dance Against PD | |
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APRIL 11 - Stand Up to Parkinson's
GLOBAL GOAL: ONE MILLION Sit to Stands
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APRIL 11 - Insight into Parkinson's
FREE online conference powered by PD WARRIOR
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April 22 - Parkinson's Unity Walk
Central Park in New York City
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Research - Wellness - Advocacy | |
Trichloroethylene:
An Invisible Cause of Parkinson's?
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Trichloroethylene (TCE), a chemical often used in dry cleaning, is a known carcinogen and has contaminated numerous sites across the globe, including the water at Camp Lejeune. Reports of people who were exposed to TCE and went on to develop Parkinson’s date as far back as 1969. The researchers described seven cases, from a former NBA basketball player to a Navy captain, with a clear history of exposure, whether at work or through the environment at known contaminated areas.The evidence linking possible exposure to TCE in these cases is circumstantial, but raises worrisome questions about the link between the chemical and the disease. In the video below, Ray Dorsey, MD and PD Avengers cofounder Larry Gifford sat down to better understand the claims.
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WEBCAST
Join The Brian Grant Foundation's webcast discussion with Ray Dorsey, MD, Brian Grant, and Amy Lindberg on Monday, March 27 at 12pm PT/3pm ET. Register for the Zoom discussion here.
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US FDA Gets Under AbbVie's Skin -- Denies New Subcutaneous Infusion Pump of Levodopa |
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AbbVie Inc (ABBV.N) said on Wednesday the U.S. Food and Drug Administration had declined to approve its Parkinson's disease therapy for adults and had requested for more information on the device used to administer the treatment. The therapy, ABBV-951, is a formulation of carbidopa-levodopa, the standard of care for the disease. It is administered subcutaneously, or under the skin, through an infusion pump.
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It's a bird, It's a plane, It's ...PD AVENGERS!
Moomba Festival Birdman Rally
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“I would never ever have done this if I was healthy and never had Parkinson’s,” said Geoff Constable, 66, who entered to raise money to fight the disease.
Constable, who has young-onset of the condition, said exercise helped him delay needing to increase medication. “For me, it was all about ... putting yourself out there and showing young people with Parkinson’s they can do something really crazy.”
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WORLD PARKINSON'S DAY
WE MAKE A DIFFERENCE
Headlines from the past 12 months
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- MARCH 2023 | A new stem cell therapy for Parkinson’s disease has just been administered to a person for the first time — and if it works as hoped, it could revolutionize how doctors treat the disease.
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MARCH 2023 | Trichloroethylene (TCI) may be contributing to the global spread of Parkinson's according to an article in the Journal of Parkinson’s Disease
- FEBRUARY 2023 | Phase 3 Trial of Buntanetap Expands to Europe. Annovis is actively recruiting for 50 clinical sites open in the U.S., and soon for 48 more sites in five EU countries: Italy, Spain, Hungary, Poland and Germany.
- DECEMBER 2022 | North American researchers discovered Parkinson's disease is 50% more common than previously reported.
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- SEPTEMBER 2022 | Joy Milne, the woman who can smell Parkinson's and a PD Avenger, collaborates with researchers in creating a 3-minute test to diagnose Parkinson's.
UPDATE: In March 2023, Joy took her story to the
TedX stage and was the only speaker to get a
standing ovation.
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- SEPTEMBER 2022 | The National Plan to End Parkinson's Disease Act is introduced in the U.S. Senate and House of Representatives. The Bipartisan Act is the first-ever legislation solely devoted to ending Parkinson’s disease. It was never voted on and will be reintroduced in 2023.
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OCTOBER 2022 | Amazon, Apple, Google, Meta, and Microsoft are teaming together for the “Speech Accessibility Project” led by The University of Illinois. It aims to expand voice recognition technology to make it “more useful for people with a range of diverse speech patterns and disabilities.”
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OCTOBER 2022 | The U.S. Environmental Protection Agency (EPA) asks a federal court for permission to go back and reconsider its decision to reapprove the use of the highly hazardous herbicide paraquat. This is a direct result of PD Avenger's partner The Michael J. Fox Foundation and other organizations suing the EPA for renewing a 15-year license for use of paraquat on food crops.
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WORLD PARKINSON'S CONFERENCE | |
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The World Parkinson Congress announced the Top Twelve Finalists of the WPC 2023 Video Competition!
These videos will be shown on screens throughout #wpc2023 in Barcelona.
Voting ends on April 20
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Congratulations to PD Avengers partners and members who had abstracts accepted for the World Parkinson Congress 2023 in Barcelona, Spain
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Veterans with Parkinson's (VwP) | |
Parkinson's disease (PD) is quite unique in how it manifests in those affected-symptomatology, progression, response to treatment, and prognosis differ among individuals although diagnosed based on cardinal features. In order to achieve directed individualized patient-centric care, these variable factors in the context of age, cultural nuances, and gender-specific differences, must be considered. | | | |
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If you are a woman living with Parkinson’s disease (PD), we want to hear from you — again!
In the past, we invited women living with PD to complete a Fox Insight survey about their unique experience. The responses received will move us forward in our goal of understanding what women around the globe are experiencing across their lifespan when it comes to PD, and what improvements can be made.
Now, we want to learn more about your experience as it relates to menopause. Through this Fox Insight survey, we hope to better understand the impact of a PD diagnosis during specific phases of a woman’s life, and its influence on overall health and quality of life.
The survey should take 5 -10 minutes to complete.
Please take part in this landmark study and help shape the future for women with PD.
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Lund University on LinkedIn: First patient receives milestone stem cell-based transplant for... | 91 comments | Exciting news flow from Cantargia lately. Most importantly, new data to be presented at AACR in April. The patients benefitting most in the CANFOUR trial in pancreatic cancer were those with high levels of the nadunolimab target, IL1RAP, in their tumors. This gives further insights around the overall positive results with e.g. | | | |
The Vibrating Glove for Parkinson's: Hope, Hype or Both? - Parkinson Secrets by Michael S. Okun, MD | The 'buzz' on the Parkinson's street for 2023 has been about these new 'gloves' which when worn have been observed to improve many of the symptoms of Parkinson's disease. The recent story on the Today Show took the 'Parkinson's gloves' viral, and I thought to start the year- together we could focus exploring this new technology. | | | |
We are all on this journey together, and it’s important that we begin to get to know each other. We have created a new section in this newsletter to profile a PD Avenger. Each month we will feature a spotlight from a full blog post that will be available on the PD Avengers website. We are starting with members of the newly formed newsletter team. If you would like to be spotlighted please email [email protected] | |
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What advice would you give to someone who is newly diagnosed?
- Only go to reputable Parkinson’s websites.
- Advocate for yourself.
- If you don’t click with your doctor, find a new one.
- Ask questions.
- Take your Mental Wellness seriously.
What do you wish you were told when you were diagnosed?
I wish she would have given me more than a pamphlet. I wish she would have told me about the importance of taking care of my mental wellness. I wish I was told it will be alright. We will work through this together.
Do you have any PD hacks to share?
- Allow yourself to have a bad day, Then, get up.
- Exercise. Exercise. Exercise.
- Do things you love.
- Understand and acknowledge the role your care partner plays in your life.
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