Cure VCP Disease

Mission Statement

Cure VCP Disease, Inc. was formed to drive efforts to cure diseases related to mutations of the Valosin Containing Protein gene.  This includes the disease Inclusion Body Myopathy associated with Paget’s disease of bone and Frontotemporal Dementia (IBMPFD).  The specific objectives of our organization are:

  1. to provide global education and awareness of VCP diseases to doctors, researchers, investors, patients, caregivers and the general public;

  2. to develop and maintain a global patient registry of VCP disease patients;

  3. to develop and maintain a fundraising vehicle to support awareness and education efforts;

  4. to collaborate with other global organizations and entities which are promoting a cure for diseases which have symptoms similar to VCP diseases;

  5. to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.

Board of Directors

Probably the most unique aspect of our Board of Directors is that a majority of us are afflicted with the VCP Gene mutation. Most of us are fighting the disease everyday. This gives every aspect of what we do more purpose and meaning as it directly affects as well as inspires us!

Medical Advisory Board

Our organization is advised by some of the best clinical and scientific researchers who are working tirelessly to understand the VCP gene mutation.