Nov 10th Partner Organization Meeting Cancelled.
Next Partner Organization Meeting Dec 15th.
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October/November
2022 Action Alert
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Our Mission
The PD Avengers is a global alliance of
people with Parkinson’s, our partners and friends, standing together demanding
change in how the disease is seen and treated.
We add urgency to research, wellness and advocacy by uniting people and organizations
to the cause of ending Parkinson’s.
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Hello to all our new members from events in London, San Francisco, Washington D.C., people who read about us in the Guardian, Ending Parkinson's Disease book, from webinars, through Partner websites, podcasts, friends, relatives and by just poking around the internet.
The PD Avengers is for everyone. So, if you know fellow humans please encourage them join.
Please take time to scroll through this newsletter. Up top there is a link to read it like a webpage. If you copy that link, you can share it with others.
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In this edition...
•Five Webinars That Will Challenge And Change The Way You Approach Parkinson's
•A Newly Penned Parkinson's Manifesto
•19 Headlines (and Links) to Important Parkinson's articles
•20 actions you can take today to make a difference
•New PD Avengers logomarks and font for you to download and replace all original logos you have put on social pages, websites, blogs, and to use moving forward
Thank you for all you are doing to live your best life and help others to do the same.
United to End Parkinson's,
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PS. If you want to be on the PD Avengers committee for WPC 2023 in Barcelona, we will be meeting in December. Please email me [email protected]
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UPDATED LOGO INCORPORATES 'THE SPARK' |
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A New Look for PD Avengers!
Welcome to the debut of our newly enhanced PD Avengers logo. We have been listening to your feedback and incorporated your great suggestions whenever possible. As with THE SPARK created earlier this year, our friends at Franklyn creative studio have been leading the charge.
There are several important elements we have incorporated based on feedback from the PD Avengers community. In working with Franklyn we were able to capture the essence of the original logo, while adding important touches. Below we have outlined the revisions and offered the reasoning behind the changes.
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Here are sample badges for partners and members. We have offer a wide variety of styles and types. If you plan to use the logo outside of a badge (below) please seek approval from the Executive Committee (Larry, Tim or Soania) |
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INCLUSIVE: The logo features a more simplified globe, which allows us to use a static logo and represent all of us, at all times. There were great versions of the old logo spinning to show all the continents, but it was inconsistently used and is not captured when printing the logo.
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URGENT: We have incorporated "The Spark" logo as a constant reminder to be urgent and unified in our messaging to spark change.
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RESPONSIVE: By request of some organizational partners and members, we have intentionally used a spark that is not RED in colour for the logo, because the red spark was triggering images of hate for some of our partners and members. We have also determined that moving forward the spark can be any colour you desire.
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TRANSLATABLE: We have added the formal non-profit name as an optional version of the logo. This should make translating the PD Avengers more understandable internationally. We suggest "PD Avengers" remains in English while Global Alliance To End Parkinson's Disease is translated into other languages.
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CREDIBLE: We believe the enhanced logo captures the essence of our grassroots attitude and think global mindset while also presenting the organization in a more professional and credible logomark.
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VERSATILE: We wanted to be sure there were a lot of options of formats and presentation styles. If there is something else specific you need please let us know.
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Please Remove Old PD Avengers Logos
from your Websites and Logo Files
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•TOUGH QUESTIONS•
•CHALLENGING CONVERSATIONS•
•STRAIGHT TALK•
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•The PD Avengers•
•European Parkinson Therapy and Training Center•
•Parkinson's Europe•
•Cure Parkinson's•
•Rune Labs•
Five webinars addressing Parkinson's with a
Think Global, Act Local
mindset.
No dodging questions. No questions off the table.
This is Straight Talk: Parkinson's.
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November 10, 2022 90 minutes 9am PST • Noon EST • 5pm GMT • 6pm CET
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Amelia Hursey, Parkinson's Europe
Moderator
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Featuring
Anabela Marcal EMA Liaison Official to US FDA
Dr. Kieran Breen Scientific Advisor
Jason Batup Patient Representative
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Why do some countries have access to medicines than others don’t? |
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November 17, 2022 90 minutes 9am PST • Noon EST • 5pm GMT • 6pm CET
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Simon Stott, Director of Research, Cure Parkinson's
Moderator
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Featuring
Jim Beck Parkinson's Foundation
Tom Foltynie London's Global University
Laurie Mischley Bastyr University Seattle
Becky Farley Parkinson's Wellness Recovery (PWR)
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208 years and still nothing can stop our condition. What’s the problem? |
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November 30, 2022 60 minutes 9am PST • Noon EST • 5pm GMT • 6pm CET
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Featuring
Polly Dawkins Davis Phinney Foundation
Jay Alberts Cleveland Clinic
Pietro Domestici European Parkinson Therapy
Melissa McConaghy PD Warriors
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Alex Reed, European Parkinson Therapy Centre
Moderator
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Can we improve our outcomes by taking control? (How and why?) |
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December 9, 2022 60 minutes 9am PST • Noon EST • 5pm GMT • 6pm CET
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Featuring
Karlin Schroeder AVP | Parkinson Foundation
Karen Lee President | Parkinson Canada
Omotola Thomas Founder | Parkinson's Africa
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Larry Gifford, President PD Avengers
Moderator
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Why do people with Parkinson’s feel they are not being listened to? |
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January 12, 2023 60 minutes 9am PST • Noon EST • 5pm GMT • 6pm CET
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Featuring
Dr. Alberto Espay University of Cincinnati
Dr. Alfonso Fasano University of Toronto
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Benjamin Stecher, Rune Labs
Moderator
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Looking at Parkinson’s: What is it really? Where do we need to learn more? |
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A five-part webinar series
in collaboration with...
PD Avengers
European Parkinson's Therapy Centre
Cure Parkinson's
Rune Labs
Parkinson's Europe
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WHAT CAN I DO FOR THE PD AVENGERS? |
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HELP YOUR SELF
Finding reliable health information is hard. Until now. Mediflix delivers trusted content from the world's leading medical experts, personalized to your needs. There is an entire channel dedicated to Parkinson's disease and PD Avengers has select videos available too.
HELP PD AVENGERS
As most of you are aware, PD Avengers is a self-funded non-profit. We do not ask members for money or ask you to raise funds for us. Here is a quick, easy way to help us out. Mediflix will make a donation for every person who clicks through to our PD Avenger's Page , revisits the page, and who signs up for free. Just click below for access to free videos filled with reliable health information about Parkinson's disease and more. |
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PROMOTE PD AVENGERS THROUGH EXCERCISE |
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Exciting news! Now you can exercise and promote the PD Avengers. Start today by tracking your exercise on Strava and joining other PD Avengers on the most popular indoor cycling/running app in the world on Zwift. We now have a PD Avengers club on each of these popular platforms. |
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Premium membership gives you more perks of course, but you don’t need it to join the PD Avengers club.
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If you want to ride alongside and converse with your favorite PD Avenger 20 miles or 3,000 kilometers away, look no further than Zwift!
Zwift is a subscription based app that costs US$14.99/mo.
In the app hit the menu button at the top, select Clubs and search for PDAvengers (all one word.)
We are starting with a weekly ride Mondays at 7:15 am PDT or 3:15 pm GMT. Everyone is welcome!
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ATTENTION U.S. CITIZENS:
PLAN TO END PARKINSON'S ACT
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47 U.S. House CoSponsors
5 Senator CoSponsors
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ATTENTION CANADIANS:
URGE THE PRIME MINSITER TO INCREASE HEALTH CARE SPENDING FOR PARKINSON'S
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Parkinson Canada has launched a letter writing campaign in an effort to encourage the Canadian government to increase health care spending for Parkinson’s care.
There is a critical lack of funding for Parkinson’s diagnosis and care in every province and territory which will only worsen with the expected growth in diagnoses from 30 to 50 per day within the next decade.
Act now by visiting the Parkinson Canada website to have a letter automatically sent to the Prime Minister, Deputy Prime Minister, Minister of Finance and Minister of Health in your name..
All current and future Canadians affected by Parkinson’s need this support!
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A Parkinson's Manifesto for Europe |
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The manifesto is made up of 30 wishes that sit under the following 5 key areas:
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Increase awareness and understanding of Parkinson’s
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Educate and train all health professionals about Parkinson’s
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Improve diagnosis, treatment and complex care needs for people with Parkinson’s
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Improve the wellbeing and quality of life for people with Parkinson’s and caregivers
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Strengthen and drive Parkinson’s research and innovation
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The Wellness Committee is doing quality checks on their symptom list and plan on launching the resource on the PD Avengers website in November! This is a change from the last update where the committee was planning to launch by symptom grouping.
The subcommittee working with PMD Alliance has their second meeting in early November!
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PD Avengers is working on the development of a Drug Accessibility advocacy program.
How can you help?
Please send a video depicting your on/off periods from Carbidopa/Levodopa, which will be used to demonstrate the importance of the accessibility of PD drugs.
If you are interested in participating, please email your “before and after” video to Kristi.
Please make sure to include your name, location, and a statement giving express permission for use by PD Avengers on all distribution platforms (YouTube, Newsletter, Social, etc.) so long as it is still in the context of drug equity and advocacy purposes.
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December 1, 2022
WORLD PARKINSON CONGRESS - Virtual - Care Partner Panel
Moderator: Elaine Book, MSW, RSW
Guests: Kate Lorig, Karen Chinca, Rebecca Gifford
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Travel Grants, Abstracts, Registration, Hotel - ALL OPEN
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#WPC2023 is accepting abstracts in basic science, clinical science, comprehensive care and advocacy categories that focus on #Parknsons
Deadline to submit is January 13, 2023. See you in #Barcelona!
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*TAKE NOTE: If you are planning to attend the WPC2023 in Barcelona we are looking for volunteers to take one hour shifts manning the PD Avengers Table and signing up new members. Email [email protected]
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**PD Avengers get together. If you want to meet and greet with other PD Avengers, we will planning a Wednesday evening happy hour event within walking distance of the conference center. Details to come.
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HELP STUDENTS WITH PD RESEARCH |
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My name is Emily, and I am a second year Doctor of Occupational Therapy student at Russell Sage College, Troy, NY USA. I am conducting a research study on the lived experience of individuals with Young Onset Parkinson's Disease. The purpose of this survey is to determine the impact of Young Onset Parkinson's Disease in areas of cognition, quality of life, and life roles. The data from this survey will be used to design an easily accessible, online symptom management guide to the Young Onset Parkinson’s Disease population. You are being asked to participate in a research project entitled An Exploration of Functional Impact in Individuals with YOPD. The project direction will be led by individuals with YOPD, for individuals with YOPD.
My name is Rebecca. I am in the process of completing my doctorate in Occupational Therapy at Russell Sage College, NY, USA. Russell Sage is conducting a study regarding dance and movement for individuals with Parkinson’s disease. We aim to gather information regarding the use of dance and better understand your perspectives on the benefits of dance and facilitators and barriers to initiation and adherence to a dance program. We are requesting that English-speaking individuals diagnosed with Parkinson’s Disease complete the following anonymous survey. The survey should take 10 minutes. Participation in this survey is greatly appreciated, and any feedback provides insight into what is currently influencing dance participation amongst individuals with Parkinson’s disease.
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PD AVENGERS MEMBER SPOTLIGHT |
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We are all on this journey together, and it’s important that we begin to get to know each other better. We have created a new section in this newsletter to get to know a PD Avenger better. 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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When was your loved one first diagnosed?
My father-in-law was diagnosed in his late 70’s, almost 10 years ago.
Will you share the story of his path to diagnosis?
Diagnosis came after much investigation into significant, unexplained weight loss. It took quite some time to get from “undetermined stomach problems” to Parkinson’s. The absence of two hallmark symptoms, tremor and loss of smell (it was lost years ago as a result of an accident), made the diagnosis a surprise for everyone!
Why did you join PD Avengers?
To encourage advocacy and education. The importance of teamwork must be promoted. Many, including PwP, care partners, medical professionals and government officials do not recognize the significant positive effect a good team has on wellbeing. Until Parkinson’s is eradicated, we need to work to improve the quality of life for everyone touched by Parkinson’s!
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What is something you wish people knew about Parkinson’s?
Not everyone with Parkinson’s has tremor and not everyone with tremor has Parkinson’s. Essential tremor runs in my mom’s family, so while people assume she has Parkinson’s, they don’t recognize it in my father-in-law.
What is something you wish people knew about Parkinson’s?
Not everyone with Parkinson’s has tremor and not everyone with tremor has Parkinson’s. Essential tremor runs in my mom’s family, so while people assume she has Parkinson’s, they don’t recognize it in my father-in-law.
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MATT EAGLES
Diagnosed at the age of seven, Matt's the role model of "Positivity in adversity" as The Patients Association recently highlighted.
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Kat and Nancy, the authors of the newly released book Being Well with Chronic Illness is popping up in book stores everywhere. Kat had the thrill of finding copies on the shelf in Fresno.
While the book is a great resource for everyone affected by any chronic illness, the authors are friends, brought together by their Parkinson's journey.
The focus of the book is on the "Wellness Spiral", a pathway anyone can follow to rise above life's harshest challenges.
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BAS BLOEM & NO SILVER BULLET |
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No Silver Bullet is a group, by and for anyone touched by Parkinson's. The founders firmly believe that PwP can manage their symptoms by doing much more than taking meds. As everyone's PD is different, they feel that sharing a wide range of expert research will allow everyone to find something to help!
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For instance, for the most recent meeting, renowned Parkinson's expert Professor Bas Bloem presented, "What type of exercise is best for people with Parkinson's." |
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Whatever your connection to Parkinson’s, you are sure to find episodes of interest. The series can be found on YouTube or wherever you get your podcasts.
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Please get in touch with Michel and Mark via email at [email protected] for information about the next webinar
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LESLIE A. DAVIDSON
Released October 2022
In this personal and unstintingly honest memoir, Leslie recounts the years that follow the diagnoses--her Parkinson's and her husband Lincoln's Lewy body dementia--charting physical changes, mastering medications (and sometimes flubbing it), the logistical puzzles of caregiving, and the steady support of their close-knit community in the small town of Grand Forks in south central British Columbia.
"What happens to love when identity stumbles and fragments? How does love survive? How can love survive? The beauty to be found in this book lies in its refusal to shirk difficult questions. Leslie writes with honesty and credibility. She is a writer who consistently sees a different slant, a jagged edge in an otherwise direct theme."-Dr. Jon Stamford, neuroscientist, co-founder Parkinson's Movement
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Paraquat and Toxic Chemicals
COVID and Parkinson's
Palliative Care
Specialized medical care that focuses on patient's quality of life
especially relief from pain and other symptoms which accompany chronic disease.
Care Partners | Partners in Parkinson's
Bio Markers?
Parkinson's Profiles
Parkinson's Drugs
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UPDATED*
2022 PD AVENGERS
ASSEMBLE MEETINGS
All times are Pacific Time Zone
*Tuesday, November 22
11:00 (UTC -8)
*Monday, December 12
4:00pm (UTC-8)
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THIS SATURDAY: NY-NJ-CT
NEXT MONTH: BAY AREA
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Parkinson’s IQ + You is a series of free in-person events designed to empower patients and care partners to manage the disease, learn about the latest research and connect with local resources. These events are fully accessible and designed for people at every stage in their journey with Parkinson's. To ensure a spot, we encourage early registration.
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Larry Gifford (Host), Jimmy & Cherryl Choi and Bill Bucklew
Saturday, October 1, 2022 for PDIQ Chicago.
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Saturday, November 12, 2022
Tri-state: New York, New Jersey, Connecticut
Hilton Meadowlands
Saturday, December 3, 2022
San Francisco Bay Area
Oakland Marriott City Center
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is incorporated under the Society Act of British Columbia, Canada operating as PD Avengers.
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PD Avengers Newsletter | Action Alert Staff |
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This is PD Avenger's third newsletter compiled and edited by a team of PD Avengers. These dedicated Parkinson' s advocates volunteered to help find, write and edit the stories you will read here. You can volunteer to help out on a monthly basis or simply submit feedback and suggestions by emailing us [email protected]
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