FAQs - Frequently Asked Questions
If your question is not answered below, email us at Larry@PDAvengers.com
Who are the PD Avengers?
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.
What do you do?
We add urgency to research, wellness and advocacy by uniting people and organizations to the cause of ending Parkinson’s.
How does PD Avengers work?
Our most pressing objective is to unite a global alliance of PD Avengers.
We want to see that all people in the world with Parkinson’s have equitable access to basic information, medication and physical therapies.
We aim to improve meaningful patient involvement at every step of medical research into new treatments and a cure.
We are also partnering with dozens of Parkinson’s organizations worldwide to collaborate and align messaging and activities for greater impact.
Why are you doing this?
Parkinson’s was discovered over 200 years ago. Since then humanity has put men on the moon, eradicated polio, changed HIV from a death sentence to a chronic illness, has mapped the human genome and discovered thousands of galaxies among the stars; and yet, has provided precious little beyond that one fifty-year-old drug for Parkinson’s.
We are tired of it.
What makes PD Avengers unique?
We are a patient led organization that does not fundraise, and operates in co-operation with other PD organizations. If your local PD organization wants information on partnering with us email Larry@PDAvengers.com
Who is your leadership?
The PD Avengers is led by an Executive Committee of its founding members.
Who can become a PD Avenger?
Anyone can join the cause and put their super powers to use in #endingpd. We welcome patients, spouses, friends, researchers, clinicians, neurologists, nurses, therapists, organizational leaders, volunteers and YOU!
Must I have PD to get involved?
No, anyone can join. Parkinson’s disease does not just affect the person with the diagnosis. It impacts the entire family, the extended social circle and the broader community. We need everyone affected by this disease to get involved, add your voice, join our team and support our vision - ending Parkinson’s.
How are you funded?
The endeavor is funded through private resources. Financial gifts, donations and bequests are welcome. Here is our donation page.
How do I get involved?
Go to the website www.pdavengers.com and click on ‘become a PD Avenger’ or “Action Alerts” or follow us on social media and help us amplify important messages, initiatives, webinars, events, surveys and more.
Facebook: www.facebook.com/pdavengers
Twitter: www.twitter.com/pdavengers
Instagram: www.instagram.com/pdavengers
Youtube: www.youtube.com/pdavengers
I keep hearing about committees and working groups. What are they?
We currently have five committees.
Board of Directors
Partners Committee
Wellness Committee
Advocacy Committee
Research Committee
Communications Committee
WORKING GROUPS:
Paraquat and other Toxins connected to PD
Recruitment
Diversity, Equity and Inclusion
Stories of PD
Women & PD
World Parkinson’s Awareness Day 2022
What do they do?
Executive Committee - meets weekly and as needed to provide strategic vision and overall direction of the PD Avengers.
Partners Committee - meets every other month. This committee is exclusively for our PD organization and group partners.
Wellness Committee - This committee meets every other week and will focus on issues and iniatives that fall within the wellness category from the importance of exercise to equitable access to basic information and medication for people with PD around the world.
Advocacy Committee - This committee meets every other week and is tasked with recruiting a million members by the end of 2022.
Research Committee - This committee meets every other week and is working on ways to prove patient involvement at every level of research improves results and encourage the research community to provide a meaningful seat at the table for people with Parkinson’s in every research project dealing with treatments or a cure.
How do you get appointed to a committee?
We will have windows of opportunity to apply and interview for a committee appointment. We will be asking for a two year commitment for applicants who are selected. Watch your email and the website for details.
Can I invite someone to join the PD Avengers?
Yes! We would love for you to share this link widely to your contacts.
Can I support PD Avengers?
Yes. Volunteers with special skills and financial donations to assist us in meeting the needs of the organization are welcome.
The PD Avengers is NOT a registered charity and as such does not issue charitable tax receipts.
Why isn’t my Parkinson’s organization or group a partner of PD Avengers?
We welcome all Parkinson’s groups to partner with the PD Avengers. Please have them contact us at Larry@PDAvengers.com
How do I unsubscribe from your email list?
You can opt out of PD Avengers at anytime by clicking “unsubscribe” at the bottom of any email from PD Avengers.
Do the PD Avengers have a privacy policy?
Yes, you can be assured that we will never sell, rent, loan or share your information with anyone. We abide by industry standard guidelines at Constant Contact.
How do I get a copy of the book “Ending Parkinson’s Disease?”
It’s available wherever you can buy new books. More details are here: https://endingpd.org/wheretobuy
I need some advice on managing my Parkinson’s disease, can the PD Avengers help?
PD Avengers is an advocacy group and does not provide medical advice. Each person’s PD history, comorbid illnesses, complications and medication history is unique. If you have any concerns about your health, please seek advice from your physician as soon as possible.
Are you part of any particular Parkinson’s organization?
No. We are an independent group who hope to work with all Parkinson’s organizations who share our vision to end Parkinson’s disease. We believe that collaboration is key and that working in silos, duplication of efforts leads to a waste of resources and time. We believe we can get far more done together than we can apart.
Who is on the Board of Directors?
Larry Gifford, President & Executive Dir.
Soania Mathur, Vice President
Tim Hague, Secretary & Treasurer
Where is the home office?
The Society's registered and records offices are located at 100 - 32160 South Fraser Way, Abbotsford, BC V2T 1 W5
What do you do with the information you are collecting on your website?
The information collected is being used to populate the TEAM page of our website with your name, PD advocacy or career highlights, city/country. It is also being used to help initially sort people into committees that align with their interests, skills/super powers. We will also use it to identify who can help from a skills and ability perspective on one-off PD Avenger projects, ie. Spanish Translation, Web Design, Music Composition, Lobbying, Legal, etc.
What countries and territories are represented? (newest country in bold)
Algeria
Angola
Argentina
Australia
Austria
Bangladesh
Barbados
Belgium
Bermuda
Bhutan
Bosnia and Hertzegovina
Brazil
Bulgaria
Cambodia
Cameroon
Canada
Cayman Island
Chad
Chile
China
Columbia
Congo
Costa Rica
Cote D'ivoire
Czech Republic
Denmark
Dominican Republic
Ecuador
Egypt
El Salvador
Estonia
Ethiopia
Finland
France
Germany
Ghana
Greece
Guatemala
Guernsey
Hong Kong
Hungary
Iceland
India
Indonesia
Ireland
Israel
Italy
Japan
Jersey
Jordon
Kenya
Luxembourg
Macedonia
Malaysia
Malta
Martinique
Mexico
Nepal
Netherlands
New Zealand
Nigeria
Northern Ireland
Norway
Oman
Pakistan
Paraguay
Peru
Philippines
Poland
Portugal
Puerto Rico
Qatar
Romania
Russia
Saint Barthelemy
Saudi Arabia
Scotland
Serbia
Singapore
Slovenia
South Africa
Spain
Swaziland
Sweden
Switzerland
Taiwan
Tanzania
Thailand
Tunisia
Turkey
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
Uruguay
Venezuela
Vietnam
Virgin Islands
Wales
Zimbabwe