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  • Diane Lucente, Genetic Counseling Manager, and our team presented an update on our FTD Family Study at the 2019 Alzheimer's Association International Conference, summarizing our experience so far studying nearly 100 members of families with genetic forms of FTD.
  • Dr. Bonnie Wong, Director of the FTD Unit's Neuropsychology Program, presented our research on the effects of genetic counseling on knowledge and the psychological impact of being a member of a family with familial FTD at the 2019 Alzheimer's Association International Conference. These very interesting results have come from the MGH FTD Family Study.
  • We recently were part of a team that published a paper describing the age of onset and characteristics of the largest known multicenter sample of familial FTD patients.
  • Other news  

Welcome to the MGH FTD Unit

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It has been known for decades that some FTD runs in families as a hereditary illness. Yet as is the case for the majority of FTD research, most of what we know has been learned in the past 10-15 years. This is particularly true for genetics. The first gene associated with FTD, the MAPT gene which makes tau protein, was discovered in 1998. The second major gene, progranulin, was discovered in 2006. The third major gene, C9ORF72, was discovered in 2011. There are other less common genes as well, and undoubtedly more to discover.

Our research currently focuses on the development of better understanding of the relationship between alterations in brain structure and function prior to and accompanying the development of symptoms of FTD. We ultimately aim to identify biomarkers of the disease in people without symptoms, and to use these biomarkers to help in the development of new treatments.

Our research is generously funded by the National Institute of Neurological Disorders and Stroke and private philanthrophy.

Please read our introductory fact sheet for more information and do not hesitate to contact us to discuss any questions you may have. Thank you.

Email us to discuss your questions or interests. An important piece of background information is to write down the details of your family history/family tree and collect information on anyone in your family who may have been affected by FTD or a related illness, which may or may not have been diagnosed correctly.
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When FTD appears to run in a family, we believe that all blood relatives can contribute in meaningful ways to research to fight against this disease. We welcome each unique individual to our program and respect that person's own agenda in our work together. We consider this work a partnership centering around mutual learning and education. If a participant does not want to know anything about their genetic status, they do not need to learn about it in order to participate. If they do, we offer free genetic counseling to assist in understanding the very personal decision to learn about genetic status.