December 23, 2020 | We are a global alliance of people with Parkinson’s, our partners and friends, standing together demanding change in how the disease is seen and treated.
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2020 - A Year We Shouldn't Soon Forget |
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When midnight tolls on New Year's Eve, millions will wish 2020 good riddence. It has been a year easily dismissed and difficult to process due to; the pandemic, uncomprehendible death, self-isolation, social distancing, masks, Zoom, home- schooling, quarantines, lost jobs, food lines, the U.S.election, social injustice rallies and protests, uncontainable fires and 30 storms that were so awful, we named them like pets. |
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However, 2020 might just be the shot in the arm we've been looking for. The COVID-19 vaccines were rushed to market, are trialed, and deteremined safe in record time. So, what we know now is the international science and medical communities can unite with urgency for a singular cause. They can tear down the red tape, share results, and collaborate to address a major global health issue. There are many lessons to take away from this past year and for me this is among the most exciting developments.
2020 will also be remembered as the year thousands of people with Parkinson's, their family and friends founded a group named the PD Avengers. The PD Avengers is rallying the global community to bring an end to Parkinson's as we know it.
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I believe we can and we will make a difference. You. Me. Us. We provide the urgency that has been lacking in many organizations and research facilities. Parkinson's has been with us 203 years, now it's our time to shake Parkinson's once and for all.
When it comes to Parkinson's, success can seem fleeting. "Shaking" it won't be easy. However, to build momentum we will celebrate small victories as we inch closer to the cure.
As PD Avengers, our only defination of success cannot be, "Do we have a cure yet?" or we will wake up every day with disappointment until the day it happens.
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As a media executive I have witnessed how success begets success: no matter how big or small. Small victories help spread hope, build a collective urgency and become sign posts leading us to that one day when you wake up and ask, "Do we have a cure yet?" and I can look you in the eye and say yes. Yes, we do.
Unitl that day, we need you. We need your voice as we build towards one million PD Avengers by the end of 2022. This Action Alert is full of things you can do today or tomorrow or next week. Some of your fellow PD Avengers have already been busy advocating and we're eager to show you what they've been up to. Plus, some great events are planned for 2021 - better mark them in your calendar!.
Thank you for becoming a PD Avenger. I encourage you to share this newletter with friends, family, your support team and ask them to sign up too!
Wishing you all the best for 2021!
Larry
Larry Gifford
Co-Founder PD Avengers
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Breaking News: Can PD Avengers FLY? |
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Distpatch from Down Under... |
Geoff Constable confirms Team PD Avengers has been accepted into the "Birdman Rally" at this March's Moomba Festival in Melbourne.
The Moomba Festival is the major event in Melbourne for the year, held over 4 days, with a state holiday, attended by around 4 million people over the 4 days. The two main events are the Parade on Monday and the Birdman Rally on the Sunday. 100’s of thousands line the banks of the Yarra river to watch the Birdman rally. It’s also televised live nationally and includes stories, interviews and also live interviews on the day with the ‘Pilots’ and their team.
Serious fun in the name of charity fundraising.
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PD Avengers by the Numbers |
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11,000 Unique Visits to our website
1,761 Number of PD Avengers (12/30)
One Million - GOAL! Number of PD Avengers we want to recruit by the end of 2022
45 Number of COUNTRIES reflected in our membership
32 Number of organiztions partnering with the PD Avengers
15 Number of founding members
6 Months ago we launched PD Avengers.
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A message from co-founder Larry Gifford. Use this video to help recruit or be inspired to create your own. |
¡Subtítulos en español! Larry Gifford nos anima a unirnos a los #PDAvengers. Objetivo: un millón de voces unidas contra el #párkinson. |
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PD Avengers Live Everywhere That Is Red |
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*Most of these countries have less than 5 PD Avengers. We only have members in 25 of the 50 States and 6 of 13 Provinces and Territories that make up Canada (Yukon! Where are you?). Be sure to recruit family and friends to make sure where you live is well represented! |
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You Have to Ask For What You Want
Our goal of one million PD Avengers by the end of 2022 will only happen because of YOU. As a PD Avenger, we need you to ask and encourage others to sign up. Ideally, each person who signs up will recruit others to join. Some tips below on how to go about it.
We are also encouraging organizations to promote and endorse PD Avengers to their members with features in e-mails, websites and opportunities to promote on site at events (post-COVID).
There are some PD Avengers that are doing an extraordinary job at recruiting. We'd like to highlight two of them.
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Carlota Lee, PwP, reached deep into her network, sent emails to over 1,000 contacts and successfully recruited at least 100 new PD Avengers in December. Obviously her super power is NETWORKING! Thank you Carlota!! |
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Lauren Simmons, PwP, is a PMD Alliance Ambassador, Rock Steady Boxing coach and founder of www.PDBuzz.com. She emailed the other day to tell us she had just reached out to 400 of her Parkie pals. Amazing! Thanks Lauren.
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RECRUITING TIPS: The most effective recruiting tool is by sharing your story with family and friends. The easiest way to recruit new members is to forward this email to friends, explain why you signed up and ask them to join.
- How often do they email? Once per Month.
- How much is it going to cost? Nothing. We dont want your money just your voice.
- How much time will it take? As much time as you want to allocate.
- I already am involved with ____ group. Does this compete? No. We're likely collaborating with that organization as well.
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Add Yourself to the
"Make it Matter" Wall
What you can do to help:
1. Send us photos of those who have been touched by Parkinson’s Disease to [email protected].
Please have family and friends take photo with a sign to send.
- All ages, all backgrounds, all languages encouraged.
- Photos must be taken with cell phone/camera in portrait (vertical) position and contain shoulders, sign and head.
- Background should be solid color, avoid busy walls with shelving, windows, photos, etc.
2. Sign must be white computer paper, held horizontally like in these photos. You can add your own message in LARGE PRINT IN BLACK INK.
Sample messages might include:
- United against Parkinson's
- Demand change
- Inspired to act
- Impatient with status quo
- United globally acting locally
- Demand equitable treatment
- One million of us by 2022
- Demand patient input
You may print out and use the sign below and fill in your own message.
Double click the sign for a .pdf version.
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PD Avengers Assemble! *DATE CHANGE |
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SAVE THE DATE!
Monday, January 18, 700p-830p GMT
*Please Note: This is a CHANGE OF ORIGINAL DATE:Thursday, January 7, 2021
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Please make plans to join your fellow PD Avengers from around the world as we preview what's in store for the PD Avengers in 2021 and how we might put your super powers to work. More details here
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SYDNEY, Australia
6:00a Tue, Jan 19
MEXICO CITY, Mexico
1:00p Mon, Jan 18
LONDON, United Kingdom, England
7:00p Mon, Jan 18
BUCHAREST, Romania
9:00p Mon, Jan 18
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VANCOUVER, Canada
11:00a Mon, Jan 18
NEW YORK CITY, USA
2:00p Mon, Jan 18
CAPE TOWN, South Africa
9:00p Mon, Jan 18
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Our number one priority is building our ranks and we cannot do that without your help.
TIPS:
- Write or outline what you want to say.
- Tell people why you joined PD Avengers.
- Encourage them to sign up at PDAvengers.com
- Use language from the FAQ page of the website to be sure what you are saying is aligned with the group www.pdavengers.com/FAQs
- You can email the videos to us, we can post your video on our YouTube page and send you a link to use to share it. [email protected]
- Be sure to tag #PDAvengers!
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Here are some examples for inspiration. |
Jon Pawelkop, Tampa Florida USA |
Soania Mathur, Toronto, Ontario, Canada |
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More Examples to keep you inspired! |
Tim Hague, Winnipeg, Manitboa, Canada |
Greg Hicks, care taker, is a PD Avenger!
New Brunswiick, Nova Scotia, Canada
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Julie Walker, United Kingdom |
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Think Global, Act Local
The PD Avengers are a Think Global, Act Local organization. The needs for each community is different, that is one reason we need to enlist so many people. Find out what is missing in your community. And then we can tap into the PD Avengers network to see if anyone else has had that issue and solved it already. Or, work with fellow PD Avengers in your area to solve it.
Tell us what you are doing in your community or what the top issue to solve?
Also we are looking for people who have experience with Constant Contact and Social Media who would be willing to donate some hours to the PD Avengers.
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Congratulations!
Please help us congratulate these two PD Avengers for their new roles. Both Sabela and Marc
presented the Executive Committee with ideas on how they feel they can best serve the PD Avengers base on their personal super powers.
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Sabela Avion, PwP, has agreed to be our Translation Team Lead. Essentially, Sebela will over see all language translation projects. Currently living in New York City, she hails from Spain. Translating our blogs, websites, papers, basic information on PD and the PD Avengers is key to this being a Global mission. |
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Marc Van Grieken, PwP, is heading up a PD Avengers Hub in Scotland. This is a test as we look for the best practices for local country and city leaders around the world. It's all part of our belief that to be successful, the PD Avengers need to Think Global and Act Local |
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Have You Read These PD Avengers Blogs? |
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There are so many great blogs that written by PD Avengers members and partners, we thought we would highlight some of our favourite recent posts. If you want your blog to be highlighted email us.
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Running On Little Reserve...
What going under the knife taught me about my Parkinson's As my colleague walked out of the doors, I took a deep breath and let out a long sigh. I knew what he was going to say before he even came into the exam room - I would be undergoing...
Read more
www.unshakeablemd.com
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Good Riddance 2020
So far, 2020 is like looking both ways before you cross the street then getting hit by an airplane." -Unknown The year started out so promising. We started with our 2020 vision glasses on New Year's Eve, looking forward to what appeared to be a...
Read more
twitchywoman.com
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Heroes - Pondering PD
I am the only person that I know who has Parkinson's Disease. I do not share this with a relative, a friend, or even an aquaintance. There is nobody in my circle that can truly comprehend what this is like to live with or where this is going to go.
Read more
ponderingpd.squarespace.com
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My Swallowing Misadventures
I've developed a swallowing problem over the past year. It's a big deal. I trace some of my 40-pound weight loss to diminished appetite tied to how slowly I now eat. Increased drooling has not been fun either. Worst case, swallowing disability...
Read more
shufflingeditor.com
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diciembre 2020 - Parkinson ! Y ahora qué ?
Post número 150 De nuevo con vosotros. Esta vez para acompañar hasta la puerta de salida lo más rápido posible a un 2020 nefasto, horrible y no sé cuantos adjetivos más...
Read more
conviviendoconelparkinson.com
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Handstand for Parkinson's
It is amazing how one little thing can set you backAlmost 6 weeks ago I broke my little toe. I was doing gymnastics (at home) and one of the children moved a chair just a millimeter to close and my left leg was kicking up and SNAP!
Read more
handstandforparkinsons.com
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2021 Events to Plan For January - February |
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PD Avenger Tim Hague with Brian Grant |
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Jan 7 - Meet & Greet with Brian Grant Foundation founder and NBA legend, Brian Grant.
Brian Grant was an NBA idol, known for tenacious rebounding and a fearless attitude on the court. During his 12‐year career, he played for five teams and became a strong contributor to his surrounding communities. In 2008, Brian was diagnosed with young onset Parkinson’s. He founded the Brian Grant Foundation to help people living with the disease lead active and fulfilling lives.
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Jan 11 - Race The Moon launches on Monday, January 11th. You won't want to miss out on this Global Awareness Campaign for Parkinson's.
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This webinar will discuss recent publications about Coronavirus and Parkinson's. The eminent panel, once again chaired by Van Andel Institute’s Professor Patrik Brundin comprises University of Toronto's Dr Alfonso Fasano, University of Colorado's Dr David Beckham and Toronto-based retired family physician and co-founder of the PD Avegers Dr Soania Mathur. Register for the event today! Only 100 Spaces Available.
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Jan 14 - Official launch of The 2021 Tom Isaacs Unifying Challenge. This year the GDNF Trial Participants will be raising awareness and money in support of neurotrophic factors. Details here
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Please make plans to join your fellow PD Avengers from around the world as we preview what's in store for the PD Avengers in 2021 and how we might put your super powers to work. More details here
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Feb 9 - Expert Q&A: Preventing Parkinson's with Ray Dorsey, MD - an Original PD Avenger!
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WHY AM I / MY ORGANIZATION NOT LISTED
OR SEEN ON THE WEBSITE?
PD Avengers who agreed to have their name listed
and/or photo on the site should be there. If not, please email.
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