Community Resources

Support for people with CNS disorders and caregivers through advocacy organizations and downloadable resources

Advocacy Organizations

GM1 gangliosidosis

Cure GM1 Foundation, a nonprofit patient advocacy group, provides families caring for a child with GM1 gangliosidosis with support and resources, opportunities to meet others families who understand the challenges of GM1 gangliosidosis, and direct funding toward research for a cure.

Visit curegm1.org for more information and support.

National Tay-Sachs & Allied Diseases Association (NTSAD), a nonprofit patient advocacy group, is leading the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff diseases by driving and funding research, forging collaboration, fostering community, and supporting families.

Visit ntsad.org for more information and support.

Frontotemporal dementia

Alzheimer’s Association, a nonprofit patient advocacy organization, is leading the way to end Alzheimer’s and all other forms of dementia—by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.

Visit alz.org for more information and support.

The Association for Frontotemporal Degeneration (AFTD), a patient advocacy organization, is on a mission to improve the quality of life of people affected by frontotemporal dementia and drive research to find a cure. Every day, they work to advance research, awareness, support, education, and advocacy.

Visit theaftd.org for more information and support.

Dementia Society of America, the nation’s leading volunteer-driven all-Dementias awareness organization, the Dementia Society of America brings much-needed education, local resources, and life-enrichment to individuals and families impacted by Dementia.

Visit dementiasociety.org for more information and support.

FTD Disorders Registry, an online database, collects information from those affected by all types of frontotemporal degeneration, including FTD.

Visit ftdregistry.org for more information and support.

Living with FTD, part of the University of Pennsylvania, brings together an interdisciplinary team of clinicians and researchers dedicated to delivering the highest quality care and support to individuals and caregivers affected by frontotemporal dementia and other neurodegenerative diseases.

Visit ftd.med.upenn.edu for more information and support.

World FTD United, an international group of organizations and health professionals, provides support for caregivers and all those affected by FTD.

Visit worldftdunited.net for more information and support.