Family Conferences

Among its various educational activities, CurePSP sponsors and organizes family conferences across the country, providing people with the opportunity to learn more about PSP, CBD and MSA and to develop a sense of community. We recognize that these diseases present daily challenges for patients and families.

The conferences include various speakers with in-the-field expertise - neurologists and movement disorder specialists who work directly with patients and their families. These experts address issues related to day-to-day life including the best ways to manage symptoms, the impact of the diseases on the family, and how to cultivate perspective of meaning and joy despite the struggles of the disease.

In addition to the educational facts learned during the session, patients, caregivers, and families learn that they are not alone. Attendees leave the meeting having forged new friendships in the PSP, CBD and MSA communities.

CurePSP strives to meet the needs of those who attend our conferences and actively seeks feedback to improve future programs. We place great value in identifying the topics or speakers that are of the greatest interest to attendees.

Upcoming Conferences

None at this time.


Past Event - 2013 Rocky Mountain Family Conference

  • Update on PSP and CBD

    Rajeev Kumar, MD
    Colorado Neurological Institute, Movement Disorders Center
    Watch on YouTube

  • Update on MSA

    Aaron Haug, MD
    Colorado Neurological Institute
    Watch on YouTube

  • Morning Speaker Q&A: PSP, CBD and MSA

    Rajeev Kumar, MD
    Aaron Haug, MD
    Watch on YouTube

  • Improving Day-to-Day Mobility

    Linda Vigil, MSPT
    Colorado Neurological Institute
    Watch on YouTube

  • Little Things Can Make a Big Difference - Tips from an OT

    Kristina Anderson, OTR
    Colorado Neurological Institute
    Watch on YouTube

  • Rehabilitative Services - Speech-Language Pathology

    John Dean, MA, CCC-SLP
    Summit Rehab at Life Care Center of Longmont
    Watch on YouTube

  • Afternoon Speaker Panel Q&A: Rehabilitative Therapy

    Linda Vigil, MSPT
    Kristina Anderson, OTR
    John Dean, MA, CCC-SLP
    Watch on YouTube

Past Event - 2013 Boston Family Conference

  • Opening Words and Welcome

    Richard Gordon Zyne, DMin
    President-CEO, CurePSP
    Janet Edmunson, MEd
    JME Insights
    Patricia Richardson
    Actress and CurePSP National Spokesperson
    Download Slides | Watch on YouTube

  • Medical Update on PSP

    Lawrence Golbe, MD
    UMDNJ Robert Wood Johnson Medical School
    Download Slides | Watch on YouTube

  • Medical Updates on CBD and MSA

    Yvette Bordelon, MD, PhD
    University of California, Los Angeles
    Download Slides | Watch on YouTube

  • Speaker Panel Q&A

    Lawrence Golbe, MD
    UMDNJ Robert Wood Johnson Medical School
    Yvette Bordelon, MD, PhD
    University of California, Los Angeles
    Watch on YouTube

  • Family Workshop: Getting Better Support

    Janet Edmunson, MEd
    JME Insights
    Download Slides

  • Patient-Only Discussion Group

    Kelley Harrison Pistacchio, PhD

  • Physical & Occupational Therapies: Improving Day-to-Day Life

    Terry Ellis, PhD, PT, NCS
    Center for Neurorehabilitation, Boston University
    Download Slides | Watch on YouTube

  • Speech & Language Therapies: Coping with Symptoms

    Heidi Phenix, MS, CCC-SLP
    Braintree Rehabilitation Hospital
    Download Slides | Watch on YouTube

  • Closing Remarks

    Richard Gordon Zyne, DMin
    President-CEO, CurePSP
    Watch on YouTube


Past Event - 2012 Johns Hopkins Caregiver Conference

  • Your PSP Management Plan

    Becky Dunlop, RN
    Johns Hopkins Parkinson’s Disease and Movement Disorders Center
    Download Slides

  • Quality Time

    Casey Young, LPN
    Professional Healthcare Resources
    Download Slides

  • Keeping Families Strong

    Trish Caruana, MSW
    VP, Programs & Education, CurePSP
    Download Slides