Look forward to volunteering at this conference as well as attending. If you are interested, conference information is attached. Great agenda with amazing speakers and participants. So much to learn!
Interested in attending? Click here to register.
Conference
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 movement disorder specialists and allied health care providers 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.
Agenda*
*Agenda is subject to change.
Thursday, June 6, 2019:
11:45AM – 2:45PM: Support Group Facilitator Training with Wendy Resnick and light refreshments – Have you ever thought about starting a support group in your home town? Join us and learn what it takes to become a support group facilitator!
3:00 – 5:00PM: Patient and Caregiver/Family Member Support Groups
Friday, June 7, 2019:
8:00 – 8:30AM
Main Hall – Registration and Breakfast
8:30 – 8:35AM
Main Hall – Welcome
8:35 – 9:15AM
Main Hall – Presentation by Lawrence I. Golbe, MD, CurePSP, Scientific Affairs
9:15 – 10:15AM
Main Hall – How to Prepare for Your Appointments and Available Treatment Options by Miriam Sklerov, MD, MS, UNC, Center for Movement Disorders
What you need to bring, what questions to ask, and how to keep track of what the doctor says throughout the appointment. What are the available treatment options right now?
10:15 – 10:30AM
Break
10:30 – 11:45AM
Main Hall – Caregiver Firsthand Experience Panel
This panel features caregivers sharing what they learned through their caregiving experiences. The presentations will include real-life tips for the management of caregiver stress and coping with daily changes and challenges, how to ask for help when you’re overwhelmed, ways to continue to find hope, legal and financial matters, brain donation, and leaving a legacy.
- Moderator: Amy Branch, CurePSP Board of Directors
- Lauren Ashley Smith
- Jocelyne Gervais
- Diane Crompton
- Sander Pomper
11:45 – 12:30PM
Main Hall – Discussing Your Diagnosis by Jessica Shurer, MSW, LCSW, UNC, Center for Movement Disorders
How to explain your disease to people unfamiliar with it in understandable terms and how family members and caregivers can help with this conversation. What are the benefits of having these discussions and how to navigate when you’re not comfortable explaining everything.
12:30 – 1:15PM
Lunch
1:15 – 1:30PM
MSA Breakout Room Transition
1:30 – 2:15PM
Main Hall – Presentation: PSP and CBD Clinical Trials, Research Update by Lawrence I. Golbe, MD, CurePSP, Scientific Affairs
Explanation on what a clinical trial is, what the latest research is, and what the local options are for clinical trials
MSA Break Out Session Room – Presentation: MSA Clinical Trials, Research Updates by Miriam Sklerov, MD, MS, UNC, Center for Movement Disorders
Explanation on what a clinical trial is, what the latest research is, and what the local options are for clinical trials
2:15 – 3:15PM
Main Hall – Building a Support Network Panel with Jessica Shurer, MSW, LCSW; Caryn Utberg, CSA, CLTC, LTCCP; and Mary Manley. Moderator: Ileen McFarland, CurePSP Board of Directors
- Discussing the importance of building a support network around you within and outside your home
- What is in-home help and when should you consider it
- What are the other resources available and when should you consider them
- How to access resources nationally, locally, and online
- Hospice and palliative care as a resource for families
MSA Breakout Session Room – Allied Healthcare Panel and the Importance of Staying Active
The benefits of staying active throughout this journey with neurodegenerative disease. Ways to integrate staying active into everyday plans and how to ensure safety throughout the day.
- Moderator: Miriam Sklerov, MD, MS
- Heather Davis, SLP
- Elizabeth Buxton, PT
- Nancy Wolk, OT
- Jenn Harrington, Pelvic PT
3:15 – 3:45PM
Break
3:45 – 4:45PM
Main Hall – Allied Healthcare Panel and the Importance of Staying Active
The benefits of staying active throughout this journey with neurodegenerative disease. Ways to integrate staying active into everyday plans and how to ensure safety throughout the day.
- Moderator: Miriam Sklerov, MD, MS
- Heather Davis, SLP
- Elizabeth Buxton, PT
- Nancy Wolk, OT
- Jenn Harrington, Pelvic PT
MSA Breakout Session Room – Building a Support Network Panel with Jessica Shurer, MSW, LCSW; Caryn Utberg, CSA, CLTC, LTCCP; and Mary Manley. Moderated by Ileen McFarland, CurePSP Board of Directors.
- Discussing the importance of building a support network around you within and outside your home.
- What is in-home help and when should you consider it
- What are the other resources available and when should you consider them
- How to access resources nationally, locally, and online
- Hospice and palliative care as a resource for families
4:45 – 5:00PM
Closing by Bill McFarland, Chair, CurePSP Board of Directors
