PRESS & NEWS

CurePSP Virtual Family Conference: May 21, 2021

CurePSP-Family-Conference-2021-05-21

Persons diagnosed, caregivers, and families can learn about management techniques for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA) during the CurePSP Virtual Family Conference on May 21 and 22, 2021. Sessions will be held Friday and Saturday from 11:00 a.m. to 3:00 p.m. Eastern Daylight Time (8:00 a.m. to 12:00…

Persons diagnosed, caregivers, and families can learn about management techniques for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA) during the CurePSP Virtual Family Conference on May 21 and 22, 2021. Sessions will be held Friday and Saturday from 11:00 a.m. to 3:00 p.m. Eastern Daylight Time (8:00 a.m. to 12:00 p.m. Pacific).

During this two-day conference, CurePSP will encourage and offer activities that foster communication, exchange of ideas and information, and interaction.

Presenters will include CurePSP staff and committee members, representatives from FreeWill, and professionals from Virginia Commonwealth University Health. These speakers have in-the-field expertise and will 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 a perspective of meaning and joy despite the struggles of the disease.

Topics discussed include:

  • Neuro-ophthalmology
  • Telehealth
  • Occupational therapy and equipment
  • Emotional support and self-care
  • Daily practical tips
  • Patient perspectives
  • Brain donations and research
  • Wills and advance directives
  • CurePSP resources and support groups

Watch the recorded sessions on the CurePSP YouTube channel.

Get Conference Materials

The CurePSP Guidebook, which will be referenced during the conference, will be available to download for free, can be bought by itself online, or is available for purchase 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, place your order by Friday, May 7, 2021. They also are available to purchase during registration or separately through the Eventbrite checkout.

Orders placed after May 7 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.

Share Your Photos

Wear CurePSP swag (available in the CurePSP Shop), take a picture, and post it to the online album. Photos can be emailed to events@curepsp.org or posted on Facebook and Instagram using #curepsp.

Requirements for picture files:

  • Provide a high-resolution image with text in a JPEG or PNG format.
  • Keep images to no more than 31.25 times wider than they are tall.
  • Limit photo size to no more than 200 MB.
  • Include your name, phone number, and organization name in your email.

If you have any questions, contact CurePSP at events@curepsp.org.

About CurePSP

CurePSP is a nonprofit organization working to increase awareness, advocate for patients and families, and fund research for devastating prime-of-life neurodegenerative diseases, including PSP, CBD, and MSA. CurePSP provides advocacy and support for patients, families, and caregivers; education for physicians and allied healthcare professionals; and funding for research.

Together we can find a cure for ftd

The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.

Your privacy is important! We promise to protect it. We will not share your contact information.

Read Full Privacy Statement