Patient Advocacy Groups
CReATe’s Patient Advocacy Group (PAG) partners include the ALS Association (ALSA), the Muscular Dystrophy Association (MDA), the Association for Frontotemporal Degeneration (AFTD), and the Spastic Paraplegia Foundation (SPF). In addition to their integral role in the activities and success of the CReATe Consortium, they are engaged in a wide range of activities including supporting research and patient care, as well as raising awareness and public advocacy.
The ALS Association
Focuses on care, advocacy, and research to discover treatments and a cure for ALS while empowering those affected to live life to the fullest.
Muscular Dystrophy Association
Supports efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases.
Association for Frontotemporal Degeneration
Aims to improve the quality of life of people affected by frontotemporal degeneration (FTD) and drive research to a cure.
Spastic Paraplegia Foundation
The Spastic Paraplegia Foundation is dedicated to advancing research and finding cures for two groups of closely related, rare, and progressive neurological disorders. They are hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). These are neurological disorders affecting the voluntary muscles. The disorders are progressive and may lead to patients being unable to walk, and more.
Cure VCP Disease
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).