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 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 to be discussed include:
- 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
The webinar will be set up on the Zoom platform. Registration is required. A link will be emailed to registrants twice from Eventbrite before the event: the first will be two hours before the beginning and the second one will be 10 minutes before.
The conference will be recorded and a link to the video will be emailed to all registrants.
Those who are unable to afford the conference can use the promo code CUREPSP100 at checkout for a free ticket.
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 email@example.com 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 firstname.lastname@example.org.
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.