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Meet Our Partners

The FTD Disorders Registry was founded by The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to cure Frontotemporal Dementia. Registry data will be used to support research studies and clinical trials by advocacy groups, scientists, and clinicians. The combined voices of our registrant volunteers will empower the FTD Registry to inform on more patient-friendly clinical trial design and to stimulate new conversations with regulatory and policy groups in aid of patient-focused drug development.

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AFTD was founded (originally as the Association for Frontotemporal Dementias) by Helen–Ann Comstock in 2002. The organization is the product of her experience as an FTD caregiver and collaboration with scientists, physicians and other caregivers who echoed the need for increased attention to these devastating diseases. Today AFTD funds research toward diagnosis, treatment and a cure, provides information and support to those directly impacted by FTD, works to raise awareness and understanding of FTD and advocates for research and appropriate, affordable services. We value knowledge, collaboration, respect, dignity and compassion. The AFTD is a 501(c)(3) organization.

https://www.theaftd.org/

 

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The Bluefield Project was founded by a family group whose lives have been directly impacted by frontotemporal dementia. The Bluefield Project was established in 2010 to fund research directed towards curing frontotemporal dementia (FTD). Frustrated that there were no treatment prospects on the horizon for frontotemporal dementia, this family provided funds to the University of California, San Francisco to form the Consortium for Frontotemporal Dementia Research (CFR). The Bluefield Project works to raise awareness and increase support to accelerate frontotemporal dementia research. The Bluefield Project is a 501(c)(3) organization. http://www.bluefieldproject.org/

In addition to funding from the AFTD and The Bluefield Project, the FTD Disorders Registry is supported by a generous grant from the Rainwater Charitable Foundation’s Tau Consortium program. http://tauconsortium.org/

 

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Our Registry Development Partners

 

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Provoc is a full-service communications firm specializing in strategy, branding, and online communications and tools. They are a certified B Corp. focusing on helping progressive non-profits and socially responsible businesses. FreeFlow Digital is a strategic technology firm with expertise in development and content management systems, creating and migrating data-driven websites. Together, this powerful team of experts has worked closely with the Banner Health Alzheimer’s Institute to build the Alzheimer’s Prevention Initiative Registry. From this collaboration of like-minded organizations, the Banner Alzheimer’s Institute has generously given Provoc permission to adapt the Alzheimer’s Prevention Registry platform to the needs of the FTD Disorders Registry.