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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.

MDA logo

Muscular Dystrophy Association

Supports efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases.

AFTD logo

Association for Frontotemporal Degeneration

Aims to improve the quality of life of people affected by frontotemporal degeneration (FTD) and drive research to a cure.

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Spastic Paraplegia Foundation

Supports research to cure two similar upper motor neurological diseases: hereditary spastic paraplegia and primary lateral sclerosis.


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).