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.

 

Register for the 2016 East Coast Family Conference, Flushing, New York, March 11 - 12

 

2016 West Coast Family Conference

Friday, February 19, 2016 - Saturday, February 20, 2016
San Mateo Marriott
San Mateo, California

The 2016 West Coast Family Conference kicks off on Friday, February 19, with a networking reception featuring actress and CurePSP National Spokesperson, Patricia Richardson. The reception will be followed by a Q&A session and CurePSP Board of Directors roundtable, giving attendees the opportunity to learn more about our Board members. Later that evening, two supports groups - one for patients and one for care partners - will be held.

Saturday, February 20, features a full day of sessions, opening with a patient profile presented by CurePSP President, Dave Kemp.

2016 West Coast Family Conference registration is $40.00 per person and includes access to all educational sessions, networking reception with light refreshments, continental breakfast, lunch buffet and afternoon snacks. Register now.

Agenda

Friday, February 19

  • Registration ● 3:00 pm - 3:30 pm
  • Networking Session ● 3:30 pm - 4:30 pm
  • CurePSP Board of Directors Roundtable ● 4:30 pm - 5:00 pm
  • Support Groups ● 7:00 pm - 9:00 pm

Saturday, February 20 

  • Registration/Breakfast ● 8:00 am - 8:45 am
  • Welcome and Patient Profile ● 8:45 am - 9:00 am   
  • Typical Trajectory of a PSP Patient ● 9:00 am - 9:50 am
  • Break ● 9:50 am - 10:20 am
  • Clinical Trials ● 10:20 am - 11:30 am
  • Research from CurePSP ● 11:30 am - 12:05 pm   
  • Lunch and Volunteer Acknowledgements ● 12:05 pm - 1:00 pm   
  • Communication and Swallowing Interventions ● 1:00 pm - 2:15 pm
  • Break ● 2:15 pm - 2:45 pm
  • Living with PSP and CBD ● 2:45 pm - 3:45 pm   
  • Diagnosis and Advocacy ● 3:45 pm - 5:00 pm
  • Closing Remarks ● 5:00 pm - 5:05 pm

Speakers

Typical Trajectory of a PSP Patient
Brent Bluett, DO, Cleveland Clinic Lou Ruvo Center for Brain Health

Clinical Trials
Adam L. Boxer, MD, PhD,UCSF Memory and Aging Center

Patient Engagement Program (PEP)
Trish Caruana, MSW, CurePSP and PEP

Research from CurePSP
Aimee Kao, MD, PhD, University of California, San Francisco

Communication and Swallowing Interventions
Joey Laus, MS, CCC-SLP,UCSF Medical Center

Living with PSP and CBD
Robin Ketelle, MS, RN,UCSFMemory and Aging Center

Diagnosis and Advocacy
Pravin Khemani, MD,UT Southwestern Medical Center

West Coast Family Conference Registration

2016 West Coast Family Conference registration is $40.00 per person and includes access to all educational sessions, networking reception with light refreshments, continental breakfast, lunch buffet and afternoon snacks. Register now online. If you have any severe food allergies or need assistance with registering, please contact Jaclyn Zendrian at 800-457-4777, ext. 5669 or zendrian@curepsp.org. Space is limited, so register today!





HOTEL INFORMATION


San Mateo Marriott San Francisco Airport
1770 South Amphlett Blvd.
San Mateo, CA 94402

Phone: 650-653-6000



 

2016 East Coast Family Conference

Friday, March 11, 2016 - Saturday, March 12, 2016
Sheraton LaGuardia East
Flushing, New York

The 2016 East Coast Family Conference begins the afternoon of Friday March 11, with a reading and book signing by actress and author, Kathryn Leigh Scott. Her recent book, “Last Dance at the Savoy: Life, Love and Caring for Someone with Progressive Supranuclear Palsy, is an intimate memoir of caring for her husband, Geoff Miller. Friday evening will include two support groups - one for patients and one for care partners.

Saturday, March 12, features a full day of sessions, opening with CurePSP President, Dave Kemp and Dr. Wai Haung Yu, Columbia University Medical Center.

2016 East Coast Family Conference registration is $50.00 per person and includes access to all educational sessions, book signing reception with light refreshments, continental breakfast, lunch buffet, and afternoon snacks. Register now.

Agenda

Friday, March 11

  • Registration ● 3:00 pm - 3:30 pm
  • Reading and Book Signing with Kathryn Leigh Scott ● 3:30 pm - 5:30 pm
  • Support Groups ● 7:00 pm - 9:00 pm

Saturday, March 12 

  • Registration/Breakfast ● 7:30 am - 8:30 am
  • Welcome ● 8:30 am - 8:40 am   
  • Overview of CurePSP Research ● 8:40 am - 8:55 am
  • Current Research into Tauopathies ● 8:55 am - 9:40 am
  • Enrolling in Clinical Trials and Patient Engagement Program (PEP) ● 9:40 am - 10:40 am
  • Break ● 10:40 am - 11:10 am
  • Movement Disorders and Patient Resources ● 11:10 am - 11:50 am
  • Treatment and Care for PSP Patients ● 11:50 am - 12:40 pm   
  • Lunch ● 12:40 pm - 1:40 pm   
  • Daily Living 1: Primary Healthcare ● 1:40 pm - 2:55 pm
  • Daily Living 2: Support Networks ● 2:55 pm - 3:55 pm
  • Closing Remarks ● 3:55 pm - 4:00 pm
  • Break and Discussion ● 4:00 pm - 5:00 pm

Speakers

Overview of CurePSP Research and Resources
Alex Klein, PhD, CurePSP Vice President-Scientific Affairs

Current Research into Tauopathies
Wai Haung Yu, PhD, Columbia University and the Taub Institute

Enrolling in Clinical Trials
Lawrence S. Honig, PhD, Columbia University and the Taub Institute

Patient Engagement Program (PEP) and Clinical Trials
Trish Caruana, MSW, CurePSP Executive Vice President and PEP President & CEO

Movement Disorders and Patient Resources
Un J. Kang, PhD, Columbia University

Treatment and Care for PSP Patients
Edward D. Huey, MD, Columbia University and the Taub Institute

Daily Living Panel Discussions (moderator)
Tal Nuriel, PhD, Columbia University

East Coast Family Conference Registration

2016 East Coast Family Conference registration is $50.00 per person and includes access to all educational sessions, book signing reception with light refreshments, continental breakfast, lunch buffet, and afternoon snacks. Register now online. If you have any severe food allergies or need assistance with registering, please contact Jaclyn Zendrian at 800-457-4777, ext. 5669 or zendrian@curepsp.org. Space is limited, so register today!

HOTEL INFORMATION

Sheraton LaGuardia East
135-20 39th Ave.
Flushing, NY 11354

Phone: 718-460-6666

There are a limited number of rooms reserved at a discounted rate of $179 plus tax for attendees of the East Coast Family Conference. Book your room now for the conference – reservations must be made by February 18, 2016, to take advantage of the special rate.

TRANSPORTATION INFORMATION

Transportation Options to the Hotel

Public Transportation


Past Event - 2015 Canadian Family Conference

Saturday, June 13, 2015
The Southway Hotel
Ottawa, Ontario Canada

Watch the 2015 Canadian Family Conference


Past Event - 2015 Southeastern Family Conference

Saturday, February 7, 2015
Gateway Grand
Gainesville, Florida

Watch the 2015 Southeastern Family Conference