$0 – $50

CurePSP and UNC Family Conference

Event Information

Share this event

Date and Time

Location

Location

Embassy Suites Raleigh Durham Airport

8001 Arco Corporate Drive

Raleigh, NC 27617

View Map

Refund Policy

Refund Policy

Refunds up to 1 day before event

Event description

Description



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.

For information on sponsoring this event please check out this link.


Hotel Information

A block of hotel rooms at the Embassy Suites Raleigh Durham Airport are available for $154.00 a night (not inclusive of tax, etc.) from June 5 - June 8, 2019. To make a reservation please use this link or call 919-572-2200. The deadline to book is May 24, 2019.





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



FAQs

Where can I contact the organizer with any questions?

Contact the Events team at events@curepsp.org or 347-394-1652.

Will this event be filmed for the CurePSP website?

Yes! Thanks to the generosity of Biogen we will be filming this event and putting it on our website and YouTube channel!


I'd only like to attend the support groups on Thursday and not the educational sessions on Friday. How do I do that?

No problem! Contact the Events team at events@curepsp.org or 347-394-1652 and we will work with you to arrange for attendance.


I'd like to volunteer! What roles are available and who do I contact?

We need registration table volunteers, a merchandise sales person, a professional photographer, floaters, and people to help setup and breakdown. Contact the Events team at events@curepsp.org or 347-394-1652.


Can I update my registration information?

Yes! This can be done through your Eventbrite profile however if you run into issues a member of our events team can help.

Is my registration/ticket transferrable?

Yes, please change the information in your Eventbrite profile however if you run into issues a member of our events team can help.

Can I register onsite?

Due to the popularity of the event we are only taking registrations online or by calling a member of the events staff at 347-394-1652.


Will CurePSP Merchandise be available?

Yes! Please bring cash or checks to expedite the process.


What are my transport/parking options getting to the event?

The hotel has parking onsite.


Can I update my registration information?

Yes, please change the information in your Eventbrite profile however if you run into issues a member of our events team can help.

Do I have to bring my printed ticket to the event?

It is preferred but not required.

The name on the registration/ticket doesn't match the attendee. Is that okay?

Yes, we understand that last minute changes happen and we will be happy to accept the new attendee.

I have food allergies whom do I inform?

Please email the events team at events@curepsp.org as soon as possible so they may make alternate arrangements.




This event sponsored in part by:




UCB






Walker Lambe



HomeWatch


Right At Home


www.rahdch.com

Right at Home of Durham & Chapel Hill

Serving Durham, Orange, Chatham and Person Counties

www.wake-rah.com

Right at Home of Wake County

Serving Wake, Johnston, Franklin, Lee, Moore and Harnett Counties

Share with friends

Date and Time

Location

Embassy Suites Raleigh Durham Airport

8001 Arco Corporate Drive

Raleigh, NC 27617

View Map

Refund Policy

Refunds up to 1 day before event

Save This Event

Event Saved