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?
American Parkinson’s Disease Association (APDA)
Vice President, Chief Scientific Officer
Founded 1961, Staten Island, NY
- 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
- Nutrition – every September is Nutrition month for BGF, cooking demos, Expert Q & A about immunity boosting foods
- Exercise – videos on website along with other resources, monthly webcasts, online tools for getting engaged, also mindfulness programs
- 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: dpf.org/women-and-parkinsons, 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
- Engage – work together with different countries, raise awareness to people with PD about clinical trials, available resources
- Inform – provide information and share what the different countries are doing, get the different resources available to all in the network.
- 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.
- Key Research Initiatives: Parkinson’s Progression Markers Initiative (looking for bio-markers), Fox Insight, Fox Trial Founder, digital Health opportunities
- Parkinson’s Buddy Network
- Podcasts, webinars, Parkinson’s IQ and You
Get involved: participate in PPMI and Fox Insight, Team Fox (fundraising programs)
Sarah Osborne, EdM, Associate Director, Community Programs
New York and Miami, FL
- Improving Care – Centers of Excellence, medical provider training,
- Advancing Research – research centers, invest more than $10M on research, PD GENEration
- 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
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.
- Wellness – we deserve the same care everywhere – Raise global awareness of inequities of access to medical, therapeutic and wellness treatments
- Advocacy – we are stronger together, goal of 1 million PD Avengers
- 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
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
- Promote services for Support Group Leaders
- Services for care-partners, family members
- Neuro-life online: provides live stream education programs
- 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.