Cure VCP Disease, Inc.

About Us

Cure VCP Disease, headquartered in Warner Robins, GA 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.

Some of our programs and activities:
- Promote awareness of VCP disease across all stakeholders through distribution of educational materials and awareness media.
- Conduct educational webinars for scientists, clinicians and patients.
- Host patient conferences and support forums.
- Host and facilitate VCP scientific forums and convenings.
- Fund basic science, translational, and clinical research
- Foster scientific collaborations, nationally and internationally
- Host and support fundraising activities for VCP disease.
- Promote awareness through participation in events and organizations such as Rare Disease Day, MDA Conferences, Global Genes, NORD, and the FDA