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.

Hotel Information

A listing of local hotels can be found by clicking here!

ADA Conference Information

Check out the ADA and wheelchair services available at the Civic Center here.

Agenda*

*Agenda is subject to change.

Friday, June 29, 2018:

12:00-2:45pm: Patient and Caregiver/Family Member Support Groups with Light Refreshments

3:15-4:45pm: Trolley Tour - Tickets must be purchased separately here

Saturday, June 30, 2018:

7:15 am – 8:00 am: Registration and Light Breakfast

8:00 am – 8:15 am: Welcome – Brad Boeve, MD

8:15 am – 8:45 am: PSP/CBD/MSA and the Brain 101 – Alex Klein, PhD

What are PSP, CBD, and MSA and how do they differ? An overview of neurodegenerative diseases and the resources available from CurePSP for patients and families.

8:45 am – 9:30 am: Making a Diagnosis of PSP/CBD/MSA – Jim Bower, MD

How does a neurologist determine which disease a patient has? Dr. Bower explains the process.

9:30 am – 10:15 am: Management and Clinical Course of PSP/CBD/MSA – Anhar Hassan, MBBCh

Discussion of early and late symptoms in PSP, CBD, and MSA, and the treatments available for these diseases.

10:15 am – 10:45 am: Break

10:45 am – 11:15 am: Research Into PSP/CBD: 2018 and Beyond – Brad Boeve, MD

Dr. Boeve will engage the audience as to what a clinical trial is, what the latest research is, what the local options are for clinical trials.

11:15 am – 11:45 am: What Has Neuroimaging Taught Us About PSP/CBD – Jennifer Whitwell, PhD

An overview of recent research on magnetic resonance imaging and positron emission tomography imaging and the clinical value of findings from these studies.

11:45 am – 12:15 pm: Research into MSA – Phillip Low, MD

We shall provide a brief review of current approaches to disease modifying treatment of MSA that is in the pipeline.

12:15 pm – 1:15 pm: Lunch with AbbVie Presentation by Dr. Frank Tennigkeit

1:15 pm – 2:15 pm: Living Well with PSP/CBD/MSA – Margaret Moutvic, MD, Sarah Dahlhauser, OTD, Sarah Boyd, DPT, Melanie Brennan, DPT

Rehabilitation providers discuss strategies that help persons with PSP/CBD/MSA maximize independence and safety.

2:15 pm – 2:45 pm: Communication and Swallowing – Heather Clark, PhD, CCC-SLP

Strategies for improving communicating information, ideas, and emotions. Tips for improving swallowing safety.

2:45 pm – 3:15 pm: Break

3:15 pm – 3:45 pm: Mindfulness as a Practice of Self-Care and Care-Giving – Angela Lunde, MA

Caring for someone with dementia is made up of an infinite number of small moments where one habitually reacts - leading to increased stress, or mindfully responds—leading to calm and overall well-being. Participants will learn more about mindfulness and experience a couple of practices that can be used at any time throughout the day.

3:45 pm – 5:00 pm: The Importance of Being Your Own Advocate - Ileen McFarland, CurePSP Board Member and Dallas Support Group Leader and The Caregiver Perspective - Jean Locke

Caregiving is not for sissies. Our emotions are constant ups and downs as we navigate our journey caring for our loved one. Love, Care, and Loss....three of the major emotions we experience. How do we cope and empower ourselves to stay strong and healthy as we meet the challenges each day. We have answers but you are the only person who can implement them and use these tips to your advantage.

5:00 pm: Closing - David Kemp, CurePSP President

FAQs

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

The hotel is walking distance and there is a parking lot. More details can be found here. There is also a Shuttle service between Minneapolis and Rochester/Mayo Clinic called Go Rochester Direct.

Where can I contact the organizer with any questions?

Contact the Events team at events@curepsp.org or 800-457-4777

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?

Unfortunately not anymore. Due to the popularity of the event we are only taking registrations online or by phone by calling a member of the events staff at 443-578-5668.

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?

Although preferred it is 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.

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