VCP Connections Conference – 2023 Family Gathering

Join us in Las Vegas for an awesome time of connection!  The conference will be focused on patient engagement and interactions with other VCP disease related 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