4D: Deep Dive into Degenerative Diseases – Navigating the Path Ep. 2: The Parkinson’s Foundation

Podcast Host: Ken Bonacco (Academy of Neurologic Physical Therapy)
Guest: Donna Sperlakis (Senior Director of Community Engagement, Parkinson’s Foundation)
Release Date: April 28, 2025

Episode Overview

This episode of the “4D: Deep Dive into Degenerative Diseases” podcast, as part of the “Navigating the Path” series, spotlights the Parkinson’s Foundation—an organization dedicated to improving life for people with Parkinson’s disease (PD) and supporting their caregivers. Ken Bonacco and guest Donna Sperlakis provide a deep dive into the Foundation’s pillars (research, care, and education), its resources for both patients and professionals, signature programs, community engagement, and innovative research initiatives.

The episode aims to introduce clinicians, researchers, patients, and caregivers to the comprehensive educational, research, and support offerings of the Parkinson’s Foundation, with practical insights both for clinical usage and patient empowerment.

Key Discussion Points & Insights

1. Parkinson’s Foundation: Mission and Essential Resources

[02:10] Donna Sperlakis

• The core mission is "to make lives better for people with Parkinson's" via research, care, education, and empowerment.
• The Foundation builds resources around these pillars, focusing on both community and professional education.

Educational Tools for Patients and Providers

[02:10] Donna Sperlakis

• Infographics and Print Resources: Noted for clarity, evidence-based content, and user-friendly design.
  • Exercise Infographic: Popular among both professionals and patients; “one of the questions that we get all the time is how much exercise should I do and what types of exercises should I do” (03:25).
• Spanish-Language Materials: Ongoing translation efforts, with over 50 pages adapted and a goal to expand further (04:27).

[03:10] Ken Bonacco: “I use all the time in practice, like some of the best, I think, infographics on exercise for people with Parkinson’s and… it’s really patient friendly.”

2. Expanding and Updating Resources

[05:00] Donna Sperlakis

• Launch of the Care Partner Guide: A concise, practical evolution from the older “Caring and Coping” book.
• The Newly Diagnosed Guide: Practical tools with immediate, actionable tips.
• Emphasis on print-friendly versions to facilitate in-clinic handouts (06:25).
• Continuous need to balance evidence and usability in all materials.

[06:08] Ken Bonacco: “There is some great… usability of them and… it’s easier to digest some information when it’s given in such… concise format.”

3. Digital Education: PD Health at Home

[07:12] Donna Sperlakis

• Created during COVID, it’s “reached more than 65 countries”.
• Structured as:
  • Mindfulness Mondays (e.g., yoga, meditation, self-kindness)
  • Webinar Wednesdays (diverse PD topics)
  • Fitness Fridays (live & recorded exercise instruction, often led by PTs)
• All sessions are archived for flexible access (08:41).

[08:41] Donna Sperlakis: “They’ve done yoga, we’ve done mindfulness of movement… things like kindness of self and acceptance. They’re amazing, really amazing programs.”

4. Vital Print Resources: Hospital Safety Guide

[10:11] Ken Bonacco

• Highlighted by patients and families as invaluable in hospital situations. [10:30] Donna Sperlakis:
  • Developed for advocacy, autonomy, and safety in hospital settings where staff “just don’t get a lot of education on Parkinson’s.”
  • Includes medication logs and symptom checklists, with recent updates to make distribution easier and more universal.
  • Foundation also runs hospital education initiatives nationwide.

[12:24] Ken Bonacco: “To have that autonomy and… educate others on their condition… is, I think, such a powerful tool.”

5. Professional Education Initiatives

[13:32] Donna Sperlakis

• Team Training: Intensive, multi-day, multidisciplinary training for movement disorder clinics or any team caring for PD; “they fill up fast” and rotate locations annually.
• Advanced Team Training: For alumni of previous training.
• Online Learning Lab: Free and paid self-paced courses for PTs, OTs, nurses, with CEUs available.
  • Website: education.parkinson.org

6. Community Grants & Support

[16:11] Donna Sperlakis

• Community Grants Program: Over $1M/year funding 100+ grants for exercise programs, mental health groups, art/music therapy, support services.
  • Focus on resource-underserved areas, seed/expansion money, and active collaboration with grant recipients.
• Grant Cycle: Applications once/year; peer-reviewed for fairness.

[17:39] Donna Sperlakis: “We use our community grant recipients to support our webinars… in-person programming. It benefits both sides. They get a lot out of it and we get a lot from them too.”

7. Foundation-Supported Research

[18:22] Donna Sperlakis

• Funds both early-career and established researchers.
• PD Generation Initiative: Free nationwide (and now Latin American) genetic testing and counseling for people with Parkinson’s.
  • Options to test at home with a novel Tasso blood-draw device.
  • Goal: Accelerate personalized medicine, offer immediate value to participants.

[20:21] Donna Sperlakis: “They can sign up to get the test at home… Or it’ll direct them to a local center… We recently just started… a blood draw. We have this little Tasso kit… you push it down and it does the blood draw… Very simple, really easy for people to use.”

Website: parkinson.org/PDGeneration

8. Community Engagement & Fundraising Events

[21:23] Donna Sperlakis

• Moving Day Walks: Celebration, fundraising, and awareness; signature community-building events.
• Revolution Spin Event: National fundraiser each February.
• Ambassador Program: Volunteers can help with support groups, health fairs, and public outreach.

[22:50] Ken Bonacco: “I’ve definitely seen the community at work at those events… so much more than just a fundraiser. I think it really helps bring awareness and bring people hope.”

Memorable Quotes

• Donna Sperlakis [02:10]: “Our mission is to make lives better for people with Parkinson’s. And so we really do that through research, through care, and through education and empowerment.”
• Ken Bonacco [03:10]: “I use all the time in practice, like some of the best, I think, infographics on exercise for people with Parkinson’s!”
• Donna Sperlakis [08:41]: “They’ve done yoga, we’ve done mindfulness of movement… kindness of self and acceptance… they’re amazing, really amazing programs.”
• Donna Sperlakis [13:00]: “We live our mission and so it’s great to be a part of an organization like that and part of that team.”
• Donna Sperlakis [17:39]: “We use our community grant recipients to support our webinars, our in-person programming… It benefits both sides.”
• Donna Sperlakis [20:21]: “[The Tasso kit]… looks like a red, like the panic button… you push it down and it does the blood draw and. Very simple, really easy for people to use.”
• Ken Bonacco [22:50]: “I’ve definitely seen the community at work at those events. And… so much more than just a fundraiser. I think it really helps to bring awareness and bring people hope.”

Notable Segments & Timestamps

• [01:23] Donna's role and overview of Community Engagement
• [02:10] Key resources: educational print/digital tools
• [05:00] New resources for care partners and the newly diagnosed
• [07:12] PD Health at Home series: What it is and global reach
• [10:11] Hospital Safety Guide: Why it's vital for hospital visits
• [13:32] Professional education: Team training, advanced training, online courses
• [16:11] Grants for clinics and community programs
• [18:22] Research funding & PD Generation genetic testing initiative
• [21:23] Fundraising and community events, ambassador opportunities

Language & Tone

The episode, in a friendly, collegial, and encouraging style, highlights the wealth of resources available for both people with Parkinson’s and professionals. Both speakers maintain an optimistic, solution-focused tone, strongly encouraging collaboration and practical use of resources.

For Listeners New to the Episode

This episode provides a comprehensive introduction to the Parkinson’s Foundation’s philosophies and practical offerings. It is especially useful for clinicians seeking patient-friendly, bilingual handouts and digital or print materials; for community members wanting to get involved; and for researchers exploring collaboration.

Several actionable links and tips are discussed, and listeners will come away with a clear sense of how they or their patients can access resources, connect with the community, participate in research, or apply for funding.

For more information or to access resources:

• Patient and professional resources: parkinson.org
• Online education and courses: education.parkinson.org
• PD Generation (genetic testing): parkinson.org/PDGeneration
• Information on events and volunteer opportunities: parkinson.org/events

“We live our mission.” – Donna Sperlakis [13:00]