Parkinson’s Organizations

At the last two Sunday Mornings with Twitchy Woman, representatives of 8 different organizations joined us to talk about what differentiates their organization from other Parkinson’s organizations. They were asked to answer the following questions:

1.  When was your organization founded and where are you based?

2.  What are the 3 top priorities for your organization?

3.  What volunteer opportunities do you have for people with PD?  ex. Ambassadors

4.  Since we are a women’s group, do you have any programs specifically for women?  Do you do research on women with PD?

Here are the links to the 2 recordings of our meetings: July 11 July 25

American Parkinson’s Disease Association (APDA)

Rebecca Gilbert, MD, PhD

Vice PresidentChief Scientific Officer

Founded 1961, Staten Island, NY

  1. Local Programs

2. National programs – Helpline, Online support group, symptoms tracker app, online training for first responders and Trainers, Online symposiums

3. Research – Fund early investigators who have not yet have established sources of funding like NIH, but are on track to eventually get bigger grants. Also for understudied populations.

Women and PD: Young Women’s Patient Education Virtual Forum and other programming, currently funding research on Menopause and PD and another one on cognitive differences in women and men

Get involved: volunteer for Optimism Walks, at programs and conferences, sit on local boards

Brian Grant Foundation

Katrina Kahl, Executive Director

Founded 2010, Portland, OR

  1. Nutrition – every September is Nutrition month for BGF, cooking demos, Expert Q & A about immunity boosting foods
  2. Exercise – videos on website along with other resources, monthly webcasts, online tools for getting engaged, also mindfulness programs
  3. Training for exercise professionals and physical therapists, for primary care practioners, etc.

No specific programs for women – open to ideas

Get involved: Program Advisory Committee, submit blogs, community ambassadors at events around country

Davis Phinney Foundation

Polly Dawkins, Executive Director

Founded 2004 in Boulder, CO

Mission is to help people with Parkinson’s to live well today.

1. Education: Every Victory Counts manual – focuses on a person living with PD, Videos, Blogs, inperson events, all designed to help you live well with PD

2. Healthy Parkinson’s Communities, includes community network, ambassadors, providing resources to communities, community grants

3. Quality of life research focuses on what can help today, including exercise, telemedicine

Women and PD:, landing page on website, produced programs and content

European Parkinson’s Disease Association (EPDA)

Dom Graham, Operations Director

Leading voice for Parkinson’s in Europe, 22 countries

  1. Engage – work together with different countries, raise awareness to people with PD about clinical trials, available resources
  2. Inform – provide information and share what the different countries are doing, get the different resources available to all in the network.
  3. Unite
  4. Advocate – top down approach, raising awareness, lobbying for policy change in the different countries, different challenges in each member organization. Can help teach what can work in each country

For Women with PD: Parkinson’s Life magazine features series #WomenandParkinsons campaign, articles and podcasts

Get involved: participate in surveys, take part in working groups, submit stories to Parkinsons Life, participate in Political Advocacy, share messages. Looking at possibility of EPDA Parkinson’s Games – fill out survey on Parkinsons Life

Michael J Fox Foundation   

Larry Gifford, Patient Council

Founded 2000 New York

Here. Until Parkinson’s isn’t.

  1. Key Research Initiatives: Parkinson’s Progression Markers Initiative (looking for bio-markers), Fox Insight, Fox Trial Founder, digital Health opportunities
  2. Parkinson’s Buddy Network
  3. Podcasts, webinars, Parkinson’s IQ and You

Get involved: participate in PPMI and Fox Insight, Team Fox (fundraising programs)

Parkinsons Foundation

Sarah Osborne, EdM, Associate Director, Community Programs

New York and Miami, FL

  1. Improving Care – Centers of Excellence, medical provider training,
  2. Advancing Research – research centers, invest more than $10M on research, PD GENEration
  3. Education and Advocacy – Aware in Care kits, trains Patient Research Advocates to work with researchers, $22M in Community grants awarded this year to local communities

Women and PD: Women & PD Initiative, Women and PD TALK – looking at unmet needs for women with PD, impact award to study sex differences in PD, online surveys

Get involved: volunteer in fundraising, educate others, chapter board member, research advocate

PD Avengers

Larry Gifford, Co-Founder, President, founded July, 2020

Think Global, Act Local

Global alliance of People with Parkinson’s, our partners and friends, standing together demanding change in how the disease is seen and treated.

Inspired by the book Ending Parkinson’s Disease as a movement for change.

  1. Wellness – we deserve the same care everywhere – Raise global awareness of inequities of access to medical, therapeutic and wellness treatments
  2. Advocacy – we are stronger together, goal of 1 million PD Avengers
  3. Research – Patients before Patents, integrate more PwP as partners of research

Women and PD: Working group for Women and PD

Get involved: Become a PDAvenger

PMD Alliance

Sarah Jones, Founder and Executive Director

Founded in 2016 to focus on services for people with Parkinson’s

Ecosystem: building programs to strengthen support around person with PD

  1. Promote services for Support Group Leaders
  2. Services for care-partners, family members
  3. Neuro-life online: provides live stream education programs
  4. Hub of Resources: centralized information for resources in every state

Women and PD: search video library for past programs about women and PD

As you can see, there are very distinct differences in these organizations. They are all deserving of our support. It is up to you to find out which one is the best fit for you, both for donations and for getting involved.

Thank you to all of our presenters for taking the time to join us on a Sunday Morning. We enjoyed having you with us.


2 responses to “Parkinson’s Organizations”

  1. […] of each organization had to say. You can also read my summary of the different organizations at Parkinson’s Organizations (August, […]

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.