PALs United for Movement Disorders
June 4, 2024 - Tardive Dyskinesia Grant Networking Session at NAMICon
March 4, 2024 - 2024 Tardive Dyskinesia (TD) Grant Orientation Webinar
This webinar represented a collaborative effort between the National Alliance on Mental Illness (NAMI), CPALs and Neurocrine Biosciences to continue to raise awareness and further advocacy efforts across the country around Tardive Dyskinesia (TD). The TD Grant program, run by NAMI National, involves 80 NAMI State Organizations and Affiliates working to create awareness and educational opportunities for TD Awareness Week (May 5-11, 2024) and throughout the year. This webinar featured training along with insights and peer-to-peer best practice sharing provided by CPALs and NAMI leaders. We were thrilled to also unveil our “CPALs TD Champions” program to support our collective and growing TD advocacy efforts by connecting experienced leaders with new grantees to transfer best practices in TD education.
September 21, 2023 - Promoting TD Education Throughout the Year and Throughout the Community
This event built on previous CPALs events that were designed to best educate the community about Tardive Dyskinesia (TD). The webinar will highlight experiences and best practices from NAMI organizations, and how to put the TDAW Toolkit into action to maximize awareness and education efforts throughout the year. There was a special focus on outreach to different segments of the community and how to address TD in non-traditional, underserved and communities of color in a culturally sensitive way.
May 26, 2023 - TD Education Grant Networking Session at NAMICon
This session was held in person at NAMICon 2023 in Minneapolis. The goal was to provide a forum for individuals/organizations involved with the TD Grant program, run by NAMI National, for networking and best practice sharing. The program, in its 3rd year, this year involves 80 NAMI State Organizations and Affiliates who worked to create awareness and educational opportunities for TD Awareness Week (May 1-7) and throughout the year. The Networking Session at NAMICon featured best practices sharing from NAMI representatives Leslie Stoyer (NAMI Summit County) Merenstein (NAMI CO) and Matt Shapiro (NAMI New York State) along with many other audience members who were able to also highlight their work and experiences related to TD awareness and education. There was great turnout with over 50 people in attendance.
March 22, 2023 - Tardive Dyskinesia Grant Orientation Webinar
This webinar represented a collaborative effort between the National Alliance on Mental Illness (NAMI), CPALs and Neurocrine Biosciences to continue to raise awareness and further advocacy efforts across the country around Tardive Dyskinesia (TD). The TD Grant program, run by NAMI National, involves 80 NAMI State Organizations and Affiliates working to create awareness and educational opportunities for TD Awareness Week (May 1-7) and throughout the year. This continues to build on the work started by CPALs in 2021 with the launch of PALs United for Movement Disorders.
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.
-
A Look Back at Our First PALs United for Movement Disorders Event
-
Presentations
-
Current Trends & Issues in Telehealth
-
Focus Areas for Telehealth Advocacy
-
Dr. Rimal Bera - Clinical Professor of Psychiatry, Psychiatry & Human Behavior School of Medicine,
University of California, Irvine -
Alexa DeVantier - Director, Alliance for Patient Access (AfPA)/
Patient & Provider Advocates for Telehealth (PPATH) -
Tracy Spinner - Senior Vice President of Education & Strategy, Goodside Health
-
-
A Patient’s Story – Learning from Life Experience
-
Athena Kabylafkas - Finance Director, National Alliance on Mental Illness, Colorado
-
Bio
-
Athena's Story - You Tube
-
-
-
-
Supplemental Links
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.
-
Presentations
-
Opening/Overview of the Current Healthcare Landscape Relating to Movement Disorders - Josie Cooper
-
Showcase Examples
-
Building on TDAW Efforts, Amplifying TD/MD Collective Voice, Next Steps\
-
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.
-
Presentations
-
Overview of the Current Healthcare Landscape Relating to Movement Disorders
-
Exploring Best Practices to Raise Awareness, Address Access Barriers, Reduce Stigma
-
Finding Common Ground to Collaborate for Collective Impact
-
-
Supplemental Links:
-
https://www.caregiveraction.org/ - If you want to share your caregiver stories, please email Lisa Winstel at LWinstel@caregiveraction.org
-