Blog

CurePSP Midwest Family Conference

CurePSP Midwest Family Conference
Event on 2017-06-23 12:30:00
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. A sleeping room block at 9.00 (not inclusive of tax, etc.) for the night of Friday, June 23rd at the Hyatt Regency O'Hare is available here or by calling 847-696-1234. Looking for something fun to do in Chicago? Check out this guide. Want to attend for free? Check out the volunteer opportunities when you click the register button! Looking for information from past family conferences? Check out this link! Sponsorship information is available here. Friday, June 23rd, 2017 12:30-3:30pm Support Group Facilitator Training Have you ever wondered what it takes to be a support group leader? Attend this training to bring back knowledge to your hometown to start your own CurePSP support group. 3:30pm-5:30pm Support Groups Two support groups will be held. One will focus on the needs of the care partner and the other support group will focus on patients. 7:00-9:00pm Networking Event Featuring a U-Step Walker Demo Come meet other attendees and some of the CurePSP board members. You'll hear about other people's journeys and how you can become involved in the foundation. There will also be a product demonstration on the newest U-Step walkers. It's an excellent chance to try them out and ask questions! Saturday, June 24th, 2017* 7:15-8:00am Breakfast and Registration 8:00-8:15am Welcome by Dave Kemp, President, CurePSP 8:15-9:15am Your Brain, Current Research, and Drug Development by Alex Klein, Ph.D, Vice President-Scientific Affairs, CurePSP Dr. Klein will be presenting on the difference between a PSP brain and a healthy brain. He will detail what the status is on current research regarding prime of life neurodegenerative diseases. He will also explain the details of drug development and why it takes so long for new therapies to be approved. 9:15-10:15am Clinical Trials – How do they work? by Bradley F. Boeve, M.D., Professor of Neurology, Mayo Clinic College of Medicine Dr. Boeve will be explaining what a clinical trial is and what it means for patients. Furthermore, he will report on the latest clinical studies and in particular about his research working with PSP patients. He will also be presenting on why tau is a popular candidate for clinical trials.  10:15-10:45am Break 10:45-11:45am Clinical Manifestations and Trajectory of the Diseases by Tanya Simuni, MD, Arthur C. Nielsen Professor of Neurology, Director, Parkinson's disease and Movement Disorders Center, Northwestern University Feinberg School of Medicine Dr. Simuni will explain what the typical trajectory of patients diagnosed with prime of life neurodegenerative diseases looks like. She will detail about adaptive equipment that may be needed in varying stages and what treatment option are available. She will also discuss what the standard of care for patients is. 11:45-12:30pm Lunch 12:30-1:30pm Dental Care for Patients by Robert E. Rada, DDS, MBA, Department of Oral Medicine and Diagnostic Sciences, University of Illinois, College of Dentistry Dr. Rada will discuss how to manage oral hygiene in patients before  neurodegenerative diseases progresses further. He will detail what products and techniques are the most helpful for patients and care partners. He will also discuss how to work with your current dentist on a patient's special needs. 1:30-2:30pm Medical Power of Attorney by Lawrence D. Levien, Partner, Akin, Gump, Strauss, Hauer & Feld, LLP and You, Your Employer, and Disability Laws – David L. Weinstein, Partner, Faegre Baker Daniels LLP Mr. Levien will discuss what a medical power of attorney is and why it is critical to have one in place. Mr. Weinstein will present on how to work with your employer to keep you working for as long as you possibly can. He will also outline what resources are available and what your rights are under disability laws. 2:30-3:00pm Break 3:00-4:00pm Building Your Care Team and Support Network by Diane Breslow, MSW, LCSW, Consultant in Parkinson’s Disease, CurePSP Patient and Care Partner Advocacy Committee This presentation will explain why Team Care is the necessary approach to working with people with PSP and their family members. Participants will learn about the healthcare disciplines, kinds of interventions, and support programs that can play a significant role in disease treatment and management. We will also talk about how to develop a helping network that includes non-health care professionals. The speaker will share resources and practical pointers, and will welcome questions from the audience. 4:00-5:00pm Adjusting to Uncertainty and Cultivating Strength by Trish Caruana, MSW, Vice President of Patient and Care Partner Advocacy, CurePSP Ms. Caruana will be presenting how to stay positive during a stage of life that has many changes and challenges. She will engage the audience as to the best ways for them to find strength in times where there are many unknowns. 5:00pm Closing by David Kemp *Agenda is subject to change.  FAQs   What are my transport/parking options getting to the event? There is a free hotel airport shuttle. There is also valet parking and a garage.   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 Event Brite 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 Event Brite profile however if you run into issues a member of our events team can help.   Can I register onsite? Yes, however it is preferred that you register online beforehand to secure your spot. If you're not comfortable putting your credit card information in online a member of the CurePSP staff can assist you by calling 800-457-4777. Can I update my registration information? Yes, please change the information in your Event Brite 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.   Can I update my registration information? Yes, please change the information in your Event Brite profile however if you run into issues a member of our events team can help. 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.

at Hyatt Regency O’hare
9300 Bryn Mawr Avenue
Des Plaines, United States

no comment

Leave a Reply