The Alzheimer's Drug Discovery Foundation and The Association for Frontotemporal Degeneration Announce Major New Investments in FTD Research


NEW YORK, Sept. 30, 2020 /PRNewswire/ -- The Alzheimer's Drug Discovery Foundation (ADDF) and The Association for Frontotemporal Degeneration (AFTD) announced today four new research awards to scientists looking for novel ways to diagnose and treat frontotemporal degeneration, the most common dementia for people under 60. The awards were announced this week to help mark World FTD Awareness Week 2020.

"Our partnerships with other forward-thinking groups like AFTD increase the impact of our funding and leverage our combined expertise to find dementia treatments faster," said Howard Fillit, MD, the ADDF's Founding Executive Director and Chief Science Officer. "Today's awards showcase our strategy of maintaining a diverse research portfolio that addresses the many biological processes that cause FTD, Alzheimer's, and other forms of dementia."

Including today's awards of more than $3.4 million, the ADDF/AFTD partnership, which offers research support from three different funding streams, has awarded $8.7 million to 39 FTD research projects. 

"The scope of today's awards demonstrates the commitment of both organizations to supporting the best science available and addressing the multiple pathways implicated in FTD and other forms of dementia," said Susan L-J Dickinson, AFTD's Chief Executive Officer. "During this week of global FTD awareness, these awards provide renewed hope for a future free of this disease."

Two of today's research awards were made through the Treat FTD Fund, which has a $10 million commitment over 10 years from The Lauder Foundation and the Samuel I. Newhouse Foundation to accelerate FTD clinical trials.

  • Giacomo Koch, MD, PhD and colleagues at the Santa Lucia Foundation in Rome are working on repurposing a drug called rotigotine for use in patients with FTD. Rotigotine is already used to treat symptoms of Parkinson's disease. Dr. Koch and his group also published a recent study showing that rotigotine improves cognitive function in patients with mild-to-moderate Alzheimer's.
  • Emiliano Santarnecchi, PhD and a team at Beth Israel Deaconess Medical Center (BIDMC), affiliated with Harvard Medical School, are evaluating a non-invasive brain stimulation therapy as a way to alleviate symptoms of FTD. This low-intensity stimulation (transcranial Alternating Current Stimulation-tACS) is designed to boost the brain's natural activity and may even change disease progression. If proven effective, the treatment may eventually be suitable for in-home use.

An award was made through the Accelerating Drug Discovery for FTD Fund, a partnership now in its 13th year, to Dieter Edbauer, MD and colleagues at the German Center for Neurodegenerative Diseases in Bonn. Their work is focused on developing an immunotherapy treatment for the most common genetic mutation in people with FTD. Mutations in the C9orf72 gene lead to abnormal buildup of a protein that causes inflammation and cell death in the brains of people with FTD.

As part of the ADDF's Diagnostics Accelerator, ADDF and AFTD also announced an award to Judith Steen, PhD of Boston Children's Hospital, affiliated with Harvard Medical School. Steen is leading a team that is developing a blood test to measure levels of two proteins, called tau and TDP-43, which are biomarkers that can signal early changes in the brains of people who will develop FTD. There are no tests currently to distinguish between tau and TDP-43 pathology, a distinction which is needed to enroll FTD patients in the right clinical trials. Biomarker blood tests would provide an efficient, minimally invasive way to diagnose FTD and provide this critical information.

Other biomarker blood tests are also needed. The ADDF's Diagnostics Accelerator brings together philanthropic capital from ADDF Co-Founder Leonard A. Lauder, Bill Gates, and others to advance bold ideas for easier, more accurate and earlier diagnosis of Alzheimer's and related dementias. The AFTD has partnered with the ADDF and the Diagnostics Accelerator initiative to grant $5M in funding towards biomarkers and diagnostics for FTD. An earlier award to the Bluefield Project to Cure FTD supports its work to measure NfL, or neurofilament light chain, a protein that is released into the blood when brain neurons are degenerating.

About Frontotemporal Degeneration (FTD)

FTD strikes adults most often in their 40s and 50s, when they are still working and may be raising a family. The condition impacts personality, behavior, language and/or movement. Most families face a very long journey to an accurate diagnosis: nearly four years on average. Today there are no disease-modifying treatments and there is no cure, but awareness is increasing and research efforts are gaining momentum. This is partly due to the efforts of a large research consortia (ALLFTD) and increasing understanding of the various mechanisms behind the disease. A growing number of therapies in emergent clinical trials are targeting genetic causes of FTD. Approximately 25% of FTD cases are caused by inherited genetic mutations. Biomarkers are critical to the effort of developing drug therapies.

About the Alzheimer's Drug Discovery Foundation (ADDF)

The Alzheimer's Drug Discovery Foundation is the only public charity solely focused on funding the development of drugs for Alzheimer's disease and related dementias, employing a venture philanthropy model to support research in academia and the biotech industry. Through the generosity of its donors, the ADDF has awarded more than $150 million to fund over 626 Alzheimer's and dementia drug discovery programs and clinical trials in 19 countries. To learn more, please visit:

About The Association for Frontotemporal Degeneration (AFTD)

Founded in 2002, The Association for Frontotemporal Degeneration is the leading U.S. nonprofit working to improve the lives of people with FTD, their care partners and loved ones. AFTD promotes and funds research toward diagnosis, treatment and a cure for FTD; stimulates greater public awareness; provides information and support to those directly impacted; fosters education for healthcare professionals; and advocates for appropriate, affordable services. AFTD's signature research efforts include the FTD Biomarkers Initiative, a multi-year effort to fund innovative approaches to the discovery and development of urgently needed FTD biomarkers. AFTD envisions a world with compassionate care, effective support and a future free of FTD.


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SOURCE Alzheimer's Drug Discovery Foundation


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