Early Bird Registration is 25% off through May 31, 2023! Use code: EARLY_BIRD25

Join us in Las Vegas for an awesome time of connection!  The conference will be focused on patient engagement and interactions with other participants. The beginning of the conference will include scientific sessions, but the focus of the event is on patient and care partner topics and engagements as well as introducing new family members to the VCP community.

AGENDA:
Thursday, July 20
6:00 PM - Informal Happy Hour and Get-Together at Stadium Swim (Circa)

Friday, July 21
8:00 - 9:00 AM - Breakfast & Registration
9:00 - 9:20 AM - Conference Open & Welcome - Nathan Peck
9:20 - 9:50 AM - Basic Science of VCP disease - Chris Weihl, MD, PhD
9:50 - 10:20 AM - About VCP Science - Armelle Pindon, PhD
10:20 - 10:35 AM - Break (15min)
10:35 - 11:10 AM - How Genetics impacts you - Gerald Pfeffer, MD, PhD
11:10 - 12:00 PM - Genetic counseling - Virginia Kimonis, MD
12:00 - 1:00 PM - Lunch
1:00 - 2:00 PM - Scientific Panel - VCP Disease - Q&A
2:00 - 2:15 PM - Why Patient Registries are important - Nathan Peck
2:15 - 2:30 PM - Break (15 min)
2:15 - 3:15 PM - What are natural history studies and how to get involved - Lindsay Alfano, PhD
3:30 PM - 4:30 PM - Collection of patient and family priorities for our strategic plan - Armelle Pindon, PhD

Saturday, July 22
8:00 - 9:00 AM - Breakfast
9:00 - 9:10 AM - Welcome - Allison Peck
9:10 - 9:50 AM - Guest speaker - Allison Bones
9:50 - 10:30 AM - Roundtable Training #1 - Sharing Your Story
10:30 - 11:10 AM - Roundtable Training #2 - Party with a Purpose
11:10 - 11:30 AM - Volunteers share their stories
11:30 - 12:00 PM - Special Video
12:00 - 1:00 PM - Lunch
1:00 - 1:40 PM - About FTD - Shana Dodge, AFTD
1:40 - 2:20 PM - Mental Health in Rare - How to talk to your clinician
2:20 - 3:00 PM - Roundtable Training #3 - How to talk about VCP disease to your friends and family
3:00 - 3:10 PM - Break
3:10 - 3:50 PM - Roundtable Training #4 - How to participate in science
3:50 - 4:30 PM - Mental Health and Families
4:30 - 4:35 PM - Closing

LODGING:
Special room rates are as follows (valid through June 23, 2023):
Thursday, July 20 - $25.00
Friday, July 21 - $74.00
Saturday, July 22 - $74.00

There is an additional charge of $20.00 per person, per room night for Triple and Quadruple Occupancy

RESORT FEE & TAXES
A $29.95 per night Resort Fee plus 13% sales tax will be added to all reservations. The Resort Fee includes the following amenities:
- Free High-Speed Wi-Fi Access (Guest-Room)
- Complimentary valet and self-parking
- Complimentary access to the Fitness Room
- Complimentary local and toll-free phone calls
- Room stay includes access to Stadium Swim along with 1-hour early entry (seating sold separately)

Pictures of Accessible Rooms:

ABOUT:
Cure VCP Disease, Inc., is a patient advocacy organization dedicated to driving the development of a cure for valosin-containing protein (VCP) associated multisystem proteinopathy (MSP), also known as IBMPFD (Inclusion Body Myopathy, Early Onset Paget’s Disease of Bone and Frontotemporal Dementia). The disease is an adult-onset, hereditary, autosomal dominant disease caused by a pathogenic variant of the VCP gene on chromosome 9. It can affect any combination of a patients’ muscles, bones and brain and can cause degenerative diseases including ALS, frontotemporal dementia, Parkinson’s, and Charcot-Marie Tooth.

This will be our third patient conference. Previous conferences were held in St. Louis in 2019 and 2022.