Episode Summary

Podcast: 4D: Deep Dive into Degenerative Diseases - ANPT
Series: Navigating the Path
Episode 8: Mission MSA
Release Date: March 31, 2026
Host: Ken Vanacco
Guests: Joe Lindahl (CEO, Mission MSA), Lindsay Beatty (DD SIG Liaison)

Overview: Exploring Mission MSA

This episode focuses on Mission MSA, the leading patient advocacy and research foundation dedicated to individuals living with Multiple System Atrophy (MSA). Host Ken Vanacco speaks with CEO Joe Lindahl and DD SIG liaison Lindsay Beatty about Mission MSA’s support resources, research initiatives, and the importance of community and professional education around this rare neurological disorder. The conversation is rich with practical information for patients, care partners, and clinicians.

Key Discussion Points & Insights

1. Introduction to Mission MSA (01:35)

• Joe Lindahl provides background on Mission MSA, its history, and its recent rebranding from the Multiple System Atrophy Coalition to reflect a more action-oriented mission.
• Quote:

  “We are the leading patient advocacy and research foundation serving those that are living with multiple system atrophy, as well as those that are researching promising therapies and hopefully a cure at some point.”
  —Joe Lindahl, (01:38)

Joe’s Personal Journey (02:51)

• No personal connection to MSA, but a strong background in healthcare association management.
• Finds the direct impact on patients and families meaningful.
• Quote:

  “Having a more direct connection with those that are going through the journey is really powerful.”
  —Joe Lindahl, (03:37)

2. Core Resources Offered by Mission MSA

A. Patient & Caregiver Support (05:05–09:20)

• Social Worker On Staff: Direct one-on-one guidance via email, phone, or scheduled appointment.
  • Quote:

    “Lauren's there to really provide a more intimate, direct, one-on-one conversation to help alleviate and prevent direction.”
    —Joe Lindahl, (05:38)

• Resource Library: Offers MSA 101 guides, recorded webinars, physical documents, and layperson-friendly educational materials.
• MSA Connect Platform: Secure, proprietary online community for patients, care partners, and professionals. Includes a proprietary app for connectivity and feedback.
  • Evaluates emerging needs—topic requests, multilingual content, preferred formats.

B. Peer and Community Support (09:20–12:43)

• MSA Connect also functions as a peer-support network for lived-experience tips, e.g., adaptive tools for daily activities.
  • Quote:

    “It’s the club no one wants to be a part of. But once you’re in it, we’re here to support you, make sure you’re being connected to people ... so you’re not alone.”
    —Joe Lindahl, (11:04)

• Community is emphasized as both a practical resource and emotional backdrop.

C. Care Grants (08:55)

• Newly established respite care program enables care partners to access brief periods of relief and self-care.

3. Resources Across the Disease Journey (10:06–13:26)

• Resource library filters materials by stage: early, middle, and late.
• Topics address practicalities like wills, power of attorney, home modifications, and care partner burnout.
• MSA Connect hosts discussions from granular adaptive advice to emotional support.

4. In-Person and Event-Based Support (13:34–17:26)

A. Centers of Excellence (COEs) (13:34)

• Network of soon-to-be 36 COEs—some international, many offering multidisciplinary care, faster referrals, and onsite/virtual support groups.
• Quote:

  “We wanted to highlight these centers to say, ‘Hey, these places exist, and we feel confident that they will be able to provide that same day or next day referral system in a singular location.’”
  —Joe Lindahl, (14:04)

B. Events

• International MSA Congress (17:26): Research-focused but now brings in patients and care partners; next in 2027.
• Path to a Cure Events: 5Ks and movement-based fundraisers double as local community-building.
• Capitol Hill Day: National advocacy event, growing in size and influence.

5. Practical Clinician & Patient Resources (17:46–21:48)

• Handouts & Guides: Easily accessible, printable materials—autonomic dysfunction, MSA stages, caregiver guides.
• Webinars & Recordings: For clinicians and patients—in-depth, up-to-date, and accessible for those new to MSA.
• Newsletter: Open to all for monthly updates on advocacy, research, and education.
• MSA Connect for Professionals: Dedicated spaces for clinicians in COEs, with a vision of fostering clinical discussions and sharing evolving evidence and guidelines.
  • Quote:

    “There is no gold standard, there is no best care per se in many instances ... So we're always thinking about how can we support our clinicians ... to make sure you have some evidence, some review guidelines.”
    —Joe Lindahl, (20:44)

6. Disease Education: Recognizing & Diagnosing MSA (21:48–26:31)

Initial & Common Symptoms (22:17)

• Often misdiagnosed as Parkinson’s Disease due to overlapping symptoms.
• Early signs: autonomic dysfunction (orthostatic hypotension, urinary incontinence), sleep disorders, speech/swallowing issues, and rapid progression of falls.
• Diagnostic challenges: No biomarker or direct genetic marker; relies on evolving clinical criteria.
  • Quote:

    “The tricky part here is ... the misdiagnosis and the dream to an accurate diagnosis. This is a tough disease to accurately diagnose.”
    —Joe Lindahl, (22:48)

  • Quote:

    “The most common sentiment is ‘I'm completely lost now. I'm one of one in many instances because most people have never heard of multiple system atrophy. A lot of their PCPs, family physicians, they've never heard of this.’”
    —Joe Lindahl, (12:04)

PT-Specific Screening (25:20)

• Lindsay Beatty explains the clinical red flags: orthostatic changes, urinary incontinence, early speech/swallowing impairment, rapid progression, and lack of response to PD medications.

7. Mission MSA’s Research Initiatives (27:14–30:57)

• Seed Funding: Supports fledgling research, hoping to build projects that later go on to attract NIH-level funding.
• COE Cures Grant: Supports multicenter, collaborative research focused on accurate, earlier diagnosis and maintaining a robust clinical trial pipeline.
• Upcoming Patient Registry/Natural History Study: Set to launch mid-2026, will provide accessible, real-world data to researchers, patients, and clinicians.
  • Quote:

    “We are actually doing our own natural history study and patient registry. ... We feel like as a patient organization, we should be seeing ... all the information is accessible by those that really want to explore msa.”
    —Joe Lindahl, (29:24)

8. Connecting, Learning, and Getting Involved (31:04–31:19)

• Engagement: Mission MSA encourages direct clinician and patient community involvement, open feedback, and innovation.
  • Quote:

    “We’re very much in flexibility and entrepreneurial mode where we want to support those that are supporting our patients.”
    —Joe Lindahl, (31:07)

Notable Quotes & Memorable Moments

• On MSA's Community Platform:

  “Community is both a resource. It is also a sense of backdrop and support system that I think is so imperative for the MSA community.”
  —Joe Lindahl, (12:36)

• On in-person vs. online support:

  “We definitely expanded sort of our networks during COVID and were able to connect virtually, but still there's this value of being in person ...”
  —Ken Vanacco, (16:51)

Timestamps for Important Segments

• Introduction to Mission MSA & Joe Lindahl’s Background: 01:35–04:15
• Key Resources for Patients & Care Partners: 05:05–09:20
• Community & Peer Support through MSA Connect: 09:20–12:43
• Centers of Excellence & In-Person Initiatives: 13:34–17:26
• Clinician/Educational Resources & Access: 17:46–21:48
• Recognizing and Diagnosing MSA, PT Insights: 21:48–26:31
• Research Initiatives & Future Plans: 27:14–30:57
• Call to Action for Engagement: 31:04–31:19

Tone and Closing Notes

The discussion throughout this episode is practical, collaborative, and supportive—balancing clinical insight with empathy for patients, families, and therapists encountering MSA. Mission MSA emerges as not just a foundation for support but a hub for evolving practice, mutual aid, and cutting-edge research.

For More Information

• Visit missionmsa.org for resources, events, and contact information.
• Clinicians and patients can join MSA Connect for peer and professional support.
• Sign up for the monthly newsletter for updates on research, advocacy, and educational opportunities.

(Advertisements, intros, and outros omitted as per guidelines.)