CurePSP Virtual Fall Family Conference: November 12, 2021

Persons diagnosed, caregivers, and families can learn about management techniques for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) during the CurePSP Virtual Family Conference on November 12, 2021. Sessions will be held Friday 11:00 a.m. to 3:30 p.m. Eastern Daylight Time (8:00 a.m. to 12:00 p.m. Pacific).

The conference includes various speakers with in-the-field expertise movement disorder specialists and allied health care providers who work directly with patients and their families.

Daily life can present challenges for those dealing with PSP, CBD, or MSA. The experts will address some of these issues, including the best ways to manage symptoms, the impact of the diseases on the family, and how to cultivate a perspective of meaning and joy despite the struggles of the disease.

Cost is $20. If you are unable to afford the conference, you may use the promo code CUREPSP21 during registration for a free ticket.

A reminder will be emailed to those who register two days before the beginning of the event. In addition, the conference will be recorded and emailed after the video has been edited.

Agenda

Friday, November 12, 2021 (Eastern Time)

• 11:00 a.m. – 11:15 a.m. Welcome
  Dr. Kristophe Diaz, CurePSP, Executive Director & Chief Scientific Officer
• 11:15 a.m. – 12:00 p.m. Social, Communication & Swallowing Safety Needs
  Matt McKeon, MS, CCC-SLP, Vocalize LLC
• 12:00 p.m. – 12:45 p.m. Navigating Social Security Disability Insurance
  Mary Jane Berry, RN, Parkinson’s & Movement Disorders Support Group
• 12:45 p.m. – 1:30 p.m. Lunch
• 1:30 p.m. – 2:30 p.m. Caregiver Perspective Panel
  CurePSP Community Members
  Jessica Shurer, MSW, LCSW, CurePSP, Director of Patient & Carepartner Advocacy
• 2:30 p.m. – 3:15 p.m. Research Updates
  Dr. Anne-Marie Wills, Massachusetts General Hospital & Harvard Medical School
• 3:15 p.m. – 3:30 p.m. Closing
  Jessica Shurer, MSW, LCSW, CurePSP, Director of Patient & Carepartner Advocacy

Speakers

The conferences will feature speakers who have in-the-field expertise, including movement disorder specialists and allied health care providers who work directly with patients and their families.

Matt McKeon, MS, CCC-SLP, Vocalize LLC, graduated with a master’s in health science in Speech Language Pathology in 2004 from Duquesne University in Pittsburgh, PA. He has worked in skilled nursing facilities, otolaryngology offices, the VA healthcare system in research capacities to study the aging voice, continuing care retirement communities, outpatient rehab, home health rehab, and consultant to healthcare companies and nonprofit foundations. He now runs his own private practice, Vocalize, LLC.  A majority of his patients are clients with progressive neurological diseases.

Jessica Shurer, MSW, LCSW, is the Director of Patient and Carepartner Advocacy of CurePSP, where she oversees the Centers of Care network and CurePSP’s resources aimed at increasing support, education, and awareness of PSP, CBD, and MSA. Prior to joining CurePSP, she served as the Center Coordinator & Clinical Social Worker of the Movement Disorders Center at the University of North Carolina at Chapel Hill, a CurePSP Center of Care and Parkinson’s Foundation Center of Excellence. There she developed a particular passion for working with PSP, CBD, and MSA through her clinical work, support groups, and time spent on the CurePSP Board of Directors. She had been in her previous position at UNC since graduating from UNC Chapel Hill with her Master of Social Work in 2012.

Anne-Marie Wills, MD, MPH, is a neurologist specializing in neurodegenerative disease, such as Parkinson's Disease, PSP, and ALS. She received her BA from Princeton University, her MD from Columbia College Physicians & Surgeons, and her MPH from Harvard School of Public Health. She has been on staff at Massachusetts General Hospital & Harvard Medical School (MGH.) since 2006. Dr. Wills' research focuses on environmental risk factors and determinants of neurodegenerative disease progression, including nutrition, caffeine, and pesticides. She is also investigating the effects of exercise interventions for neurodegenerative diseases. She is the director of the CurePSP Center of Care at MGH, which provides multidisciplinary care for people with PSP.

Get Conference Materials

The CurePSP Guidebook, a resource with 150 pages of the latest information on PSP, CBD, and MSA, is available to download for free on the Patient Resources page on the CurePSP website. It also can be purchased during registration checkout.

Buy "Conference at Home" Boxes

CurePSP is also offering special “Conference at Home” curated boxes of supplies. Each box includes:

• One 8.5" x 11" Notepad
• Two Pens
• Two Wristbands
• One First Aid Kit
• One Canvas Tote Bag
• One Reusable Metal Straw
• Two Face Masks

Each box is $100, which includes shipping and handling. To receive your box before the conference, orders must be placed by Friday, November 5, 2021. They also are available to purchase during registration or separately through the Eventbrite checkout.

Orders placed after November 5 may not reach you in time for the conference. Orders are submitted weekly on Fridays and fulfilled the following business day. Please allow 7-10 days for shipping. Refunds are not available.