September 13, 2022 - PALs United for Movement Disorders: Trends & Issues in Telehealth - Advocating for a Balanced, Patient-Centered Approach

This was the 3rd PALs United for Movement Disorders event, which followed events in October 2021 and May 2022 (see below). This webinar brought together advocates from movement disorder and mental health organizations (and others) to engage with experts and fellow advocates to address to dialogue around important clinical, financial, regulatory, privacy, quality, and health equity issues relating to telehealth, and how to better collaborate moving forward through educational and advocacy initiatives. 

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• Meeting Objectives and Agenda

• Advocate Advisors

• Moderator - Scott Suckow

• A Look Back at Our First PALs United for Movement Disorders Event

• Presentations

  • Current Trends & Issues in Telehealth

    • Dr. David Charles, Professor and Vice-Chair, Business Development & Strategy & Medical Director, Vanderbilt Telehealth

      • Bio

      • Slides

  • Focus Areas for Telehealth Advocacy 

    • Dr. Rimal Bera - Clinical Professor of Psychiatry, Psychiatry & Human Behavior School of Medicine,
      University of California, Irvine

      • Bio

      • Slides

      • TeleSCOPE Study-Poster: A 2021 Clinical Survey on Telehealth Services to Detect and Treat Tardive Dyskinesia in the Psychiatry and Neurology Outpatient Setting

    • Alexa DeVantier - Director, Alliance for Patient Access (AfPA)/
      Patient & Provider Advocates for Telehealth (PPATH)

      • Bio

      • Slides

    • Tracy Spinner - Senior Vice President of Education & Strategy, Goodside Health 

      • Bio

      • Background Slides​​​

      • National Association of School Nurses Position on Telehealth (Best Practice)

      • Telehealth: Opportunities to Improve Access, Quality, and Cost in Pediatric Care

  • A Patient’s Story – Learning from Life Experience​

    • Athena Kabylafkas - Finance Director, National Alliance on Mental Illness, Colorado​

      • Bio​

      • Athena's Story - You Tube

• Event Recording

• Event Site

• Supplemental Links

  • Sharpen Your Telehealth Skills (Medscape)​
     

May 12, 2022 - PALs United for Movement Disorders: Showcasing TD Awareness Week Best Practices to Ignite A Movement

This event built on the work started by CPALs last year with the launch of PALs United for Movement Disorders. Our inaugural PALs United for Movement Disorders web event was held October 26, 2021. The focus of this event was to showcase educational and awareness activities conducted during TD Awareness Week to highlight best practices to improve understanding of how to more effectively address TD/Movement Disorders.

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• Meeting Objectives and Agenda

• Advocate Advisors

• Speakers

• Presentations

  • Opening/Overview of the Current Healthcare Landscape Relating to Movement Disorders - Josie Cooper

    • Slides

  • Showcase Examples

    • Movement Disorders Policy Coalition (MDPC)​ - Josie Cooper | Lauren Carter-Early

      • Slides

    • National Organization for Tardive Dyskinesia - Kathleen Shea | William Cote

      • Slides

    • National Alliance on Mental Illness-New York State (NAMI-NYS) - Matthew Shapiro

      • Slides

  • Building on TDAW Efforts, Amplifying TD/MD Collective Voice, Next Steps\

    • Links Shared:

      • https://www.movementdisorderspolicy.org/

      • https://www.movementdisorderspolicy.org/td-awareness-week/

      • https://tdhelp.org/

      • https://youtu.be/MSM0NeI_Boo

• Event Recording

• Event Site 

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October 26, 2021 - PALs United for Movement Disorders: Addressing the Well-Being of Persons Affected by Movement Disorders

This event convened a select group of over 45 health advocacy and policy leaders to coalesce around common goals to raise the profile of movement disorders, like tardive dyskinesia (TD), and advance patient-centered solutions. The event broadly addressed the well-being of persons affected with movement disorders through a combination of presentations from key thought leaders and interactive discussions among event participants.

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• Meeting Objectives and Agenda

• Advocate Advisors

• Speakers

• Presentations

  • Overview of the Current Healthcare Landscape Relating to Movement Disorders 

    • Slides shared by Dr. Charles

  • Exploring Best Practices to Raise Awareness, Address Access Barriers, Reduce Stigma 

    • Slides Shared by Greg Hansch

    • Link Shared - Information about the Mental Health Parity Awareness designation in TX

  • Finding Common Ground to Collaborate for Collective Impact

    • Slides Shared by Carlos Larrauri

    • Links Shared 

      • www.fogdogmusic.net

      • https://www.youtube.com/watch?v=dBdPPHrdZ7w

• Graphic Recording of Event

• Proceedings Report

• Event Recording

• Event Site 

• Supplemental Links:

  • https://www.caregiveraction.org/ - If you want to share your caregiver stories, please email Lisa Winstel at LWinstel@caregiveraction.org

  • https://www.movementdisorderspolicy.org/

  • https://tdhelp.org/

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