The FTD Disorders Registry (FTDDR) is a shared vision between The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to Cure Frontotemporal Dementia.
A diagnosis of FTD can be isolating, so the Registry is meant to be a resource for patients and families to appreciate their place within the broader FTD disorders community and also apply their unique experience to advance research efforts toward therapies and a cure.
The Registry was founded in 2015 by AFTD and the Bluefield Project and launched to the public on March 28, 2017, when the website went live and began enrolling persons affected by the spectrum of FTD disorders (bvFTD, PPA, PSP, CBD and FTD-ALS). Registry data is used to support research studies and clinical trials by advocacy groups, scientists, and clinicians.
Today we celebrate our second anniversary by looking at the two organizations that together created the Registry.
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.
AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure. The association values knowledge, compassion, collaboration, respect, and dignity.
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; promotes and provides education for healthcare professionals; and advocates for research and appropriate, affordable services.
AFTD envisions a world with compassionate care, effective support, and a future free of FTD. It is a 501(c)(3) organization.
The Bluefield Project
The Bluefield Project to Cure FTD was founded by a family group whose lives have been directly impacted by frontotemporal dementia. It was established in 2010 to fund research directed towards curing frontotemporal dementia. 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 mission of the Bluefield Project is to translate the findings of the research consortium into the development of drugs to treat FTD.
The Bluefield Project has pursued genetic and biological projects, developed animal models and assays, identified potential drug targets and pathways, and expanded key repositories, including brain and fluid biobanks. It employs a comprehensive approach and has funded more than 26 investigators whose work directly led to two clinical trials and two patent applications.
Investigators have screened nearly 500,000 compounds, published more than 100 papers, and trained more than 50 scientists in FTD research. The Bluefield Project also pursues collaborations with pharma and biotech companies with the goal to speed the development of a therapy.
The Bluefield Project works to raise awareness and increase support to accelerate frontotemporal dementia research. It is a 501(c)(3) organization.
In addition to funding from the AFTD and the Bluefield Project, the FTD Disorders Registry is supported by the Rainwater Charitable Foundation’s Tau Consortium program. The FTDDR has received generous annual grants from the Tau Consortium since our inception in 2015.
The Tau Consortium’s mission is to accelerate the development of new treatments for Alzheimer’s disease, frontotemporal dementias, and other neurodegenerative diseases involving the dysfunctional tau protein.
Their goal is to foster high-impact, collaborative networks of scientists who work to better understand tauopathies and guide development of effective treatments for patients.
Research programs are built around four key focus areas:
- understanding genetic markers and clinical characteristics of disease
- creating novel technologies and models for studying tauopathies
- understanding the mechanism of tau’s normal function vs. dysfunction
- identifying drug candidates and biomarkers for potential translation to human use
Since founding the Tau Consortium in 2009, the Rainwater Charitable Foundation has committed more than $100 million to the program and has helped to put eight treatments into human trials.
Celebrate with Us! This week we are looking back at the history and highlights, statistics and successes as well as the future opportunities for advancing the science and moving toward finding treatments and a cure for persons affected by the full spectrum of FTD disorders.
Here is a list with links to all of the articles we posted about our Second Enrollment Anniversary:
Together we can help change the course of the disease and put an end to FTD.