3,630 PD Avengers 70 Countries 56 Partners
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PD Avengers,
Thank you for signing up and being great advocates for Parkinson's disease. Some of you are involved in committees and working groups, others wish to be, and others are comfortable on the sidelines (for now). While summer seems to have slowed down as far as actionable items, there are still some I'd like to highlight and in this addition of our newsletter/action alert, we are highlighting Parkinson's as an occupational hazard with an added emphasis on firefighters. Plus, Parkinson's and Art, and we'll check in with PD Avengers around the world.
As the PD Avengers mark its one year anniversary, Tim Hague, Soania Mathur and I are working hard to fine-tune the PD Avengers structure so that there is always clear communication and an opportunity to participate. Thank you for your patience as we work through this.
We are so proud and humbled by the support you have given PD Avengers and the collaboration and cooperation amongst the Parkinson's organizations is inspiring. Each of the groups is supporting PD Avengers and the mission in unique ways.
I want to highlight the Michael J Fox Foundation, PMD Alliance and IMPACT Parkinson's. The Michael J. Fox Foundation is allowing a PD Avengers takeover of its podcast this fall. Keep an ear out for it. PMD Alliance is providing technical expertise and a business zoom account so we can host as many as 300 people for the upcoming PD Avengers ASSEMBLE! meeting. IMPACT Parkinson's received a generous bequest and decided to pay it forward with the PD Avengers.
One of the Impact Parkinson's dedicated boxers Sue Sayer passed away from complications from Multiple Systems Atrophy. The organization is operated by sisters Heidi Clarkson and Robyn Murrell. They tell me when Sue learned that IMPACT Parkinson's was in her hometown of New Westminster, British Columbia she contacted them right away and that's how Sue became part of the family.
She signed up for everything offered at IMPACT Parkinson's Centre and was at the centre five days a week including evenings and weekends whenever something was happening! Once she started with IMPACT, Sue told them it gave her a reason to get up and go every day. She was a truly amazing and great inspiration to everyone that knew her.
Sue didn't just leave behind a legacy of inspiration, she left a sizable bequest to IMPACT Parkinson's to keep the center up and running. Heidi and Robyn accepted it with gratitude and they decided to share it with other organizations including the PD Avengers. We are inspired to keep punching forward and work together in the cause of ending Parkinson's disease. Thank you Sue and IMPACT Parkinson's.
And Thank You for being PD Avengers!
Larry
Larry Gifford
President / Executive Director
PD Avengers
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REMINDER:
YOU ARE INVITED
PD Avengers Assemble Meeting is Tuesday!
Topic: PD Avengers Bi-monthly Meeting hosted by PMD Alliance which gives us space for 300 participants. Please join us to help mark our first anniversary.
DATE: Tuesday, July 27, 2021
TIME:
11:00 AM Pacific Time (US and Canada)
2:00 PM Eastern Time
7:00p (1900) BST
Every 2 months on the Fourth Tuesday
Meeting ID: 946 2618 3378
Passcode: 298297
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Are you joining us for PD Avengers Assemble?
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LOCATION
Zoom Link in Left Column. Time shown below is PACIFIC TIME ZONE.)
DATE AND TIME
07/27/21 11:00am
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07/27/21 12:00pm
Time shown is in Pacific Time. This is a meeting for all PD Avengers and Partners. Updates, one year annv., + Q&A,
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PESTICIDES WORKING GROUP
The first meeting of the Toxic Chemicals and Pesticides working group was held in June. Here is a recording of the session. It features Parkinson Quebec's Romain Rigal who joined us to discuss how through advocacy PQ was able to help get Parkinson's classified as an occupational hazard. It's just the second place in the world to do it! Watch the video below.
Also, for U.S. PD Avengers, you can email your congress people to support a new bill in Washington which calls for the banning of Paraquat. Learn more at this link.
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Help Ban a Parkinson's-causing Chemical Called Paraquat
Banning paraquat could reduce the number of people who develop Parkinson's. Urge Congress to co-sponsor this new legislation and ban this chemical in the U.S. today.
Read more
www.michaeljfox.org
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Firefighters & Parkinson's Disease |
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A dear friend of mine from college reached out this week to share the news that a firefighter friend had been diagnosed with Parkinson's and had to retire. The next day, I spoke to a Parkinson's support group and a YOPD ex-firefighter talked about the increased risks of PD for firefighters. |
After working as a firefighter for 17 years, Greg Heath was diagnosed with Parkinson's disease. |
IAFF Parkinson's Survey
IAFF Canada has launched an online survey which they would like firefighters in Canada affected by Parkinson's Disease to complete. Please share with your Brother and Sister Fire Fighters. IAFF Canada on Facebook...
Read more
www.retiredtorontofirefight...
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Firefighters may have increased risk of developing...
SPRINGFIELD, MA (WGGB/WSHM) -- Firefighters battle brutal conditions to save our lives, and those conditions are causing life-threatening diseases. Western Mass News reported about the toxins first responders face that cause deadly diseases such...
Read more
www.westernmassnews.com
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Sign the Petition
MA bill H2378 A fire can expose firefighters to millions of chemicals and toxins. We have become aware of the massive risks these toxins pose for first responders, who breathe them in, ingest them, and absorb them through the skin while putting...
Read more
www.change.org
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If you are or were a firefighter or know someone who is a firefighter, regardless if they have PD yet, these are great links to share regarding the advocacy currently underway.
Here are some links to surveys and forums of the advocacy underway for firefighters with PD.
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Article: The Washington Post recently explored the role gender can play in how PD is diagnosed and treated |
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Parkinson's strikes more men than women. Researchers...
J. William Langston, who has been studying and treating Parkinson's disease for nearly 40 years, always has found it striking that so many more men than women show up in his clinic. His observation is not anecdotal.
Read more
www.washingtonpost.com
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Research is always a great way to be an advocate. If people with Parkinson's do not volunteer to be in trials, we will never find a way to stop PD in it's tracks. Below, Dr. Michael Okun shows PwP in the U.S.A. how to find trials for PD. You can also sign up for Fox Trial Finder. And be sure to tell your Movement Disorder Specialist or Neurologist that you are interested in participating in trials. Fox Insight is an online clinical study that anyone can participate in. Sign up right now and begin adding more data to this amazing study.
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How to find clinical trials for Parkinson's disease? -...
Many people ask us how to find clinical trials for Parkinson's. We shot a short video to help navigate and to find a Parkinson's disease clinical trial. Here are some tips. Go to clinicaltrials.gov If you use the search term "Parkinson's...
Read more
parkinsonsecrets.com
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Fox Insight
Fox Insight is an online clinical study where people with Parkinson's disease and their loved ones share information that could transform the search for better treatments.
Read more
foxinsight.michaeljfox.org
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VIVID Dreams Art Exhibition |
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We welcome all the artists from the Vivid Dreams Art Exhibition to the
PD Avengers
Even if you are nowhere near London, you do not want to miss this. Parkinson’s Art, a PD Avengers Partner, proudly presents VIVID Dreams, an international art exhibition showcasing the creative brilliance of those living with Parkinson’s. With a stunning international line up of artists, many living with the condition, the exhibition is brought to life through paintings and poetry.
Funded by the Arts Council England, the event is in support of the Parkinson’s UK charity.
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The exhibition will be held at the Gallery@OXO, London and virtually online at parkinsons.art
Key Information:
Open to the public: 18-29th August 2021, 11a-6p daily at the OXO Tower
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In 2008, after his diagnosis of Parkinson's disease at the age of 65, USAF veteran, Norman Greenstein, decided he would turn the dark diagnosis he had received into a positive opportunity.
At the age of 69, after early retirement, he embarked on fulfilling his lifelong dream of becoming a painter.
The family is donating 20% of sales from all paintings and books to the American Parkinson’s Disease Association (APDA), and The Michael J Fox Foundation.
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PD Avengers Rise Up Around the World |
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PD Avengers in Germany have a new Facebook Group. If you'd like to create a PD Avengers group page for your community, please email us and we'll help with logo and artwork and help promote your page. |
PD Avengers in Deutschland hat eine neue Facebook-Gruppe. Wenn Sie eine PD Avengers-Gruppenseite für Ihre Community erstellen möchten, senden Sie uns bitte eine E-Mail und wir helfen mit Logo und Artwork und helfen, Ihre Seite zu bewerben. |
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In Romania, Adriana Totan leads Asociatiei "Mai puternici decât boala Parkinson" (Stronger Than Parkinsons). It is one of three Parkinson's organizations. I chatted with her on Zoom about why she is a PD Avenger and what the conditions and treatments are like in Romania.
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PARKINSON'S DISEASE PATIENTS WELFARE SOCIETY KOLKATA is the newest partner of PD Avengers. It operates a support group for people suffering from PD and their caregivers.
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The clever parkies at Con d Parkinson in Spain are having fun with advocacy through a series of videos. It's great to see them taking the topic of Women and PD Seriously but still finding a space for fun, friendship, levity and laughter. |
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Wingin’ it for Parkinson’s
is Sept 18!
This wing-eating relay is a fundraiser like no other!
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BEFORE YOU GO...
Please update your PD AVENGERS PROFILE by clicking the link below called "Update Profile." If you want to add your picture to the website you can send it to [email protected] along with your city, region, country and 2 to 4 PD or career related items.
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Global Alliance to End Parkinson's Disease is incorporated under the Society Act of British Columbia, Canada operating as PD Avengers.
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