Cure MAPT FTD is an organization dedicated to awareness, advocacy, and connection for all those affected with a MAPT genetic mutation causing Frontotemporal Dementia (FTD). As stated on the Cure MAPT FTD website, “The MAPT gene encodes “microtubule-associated protein tau” which is then expressed within the neurons in the brain. Mutations in the MAPT gene can exert several different effects on how this process functions. These differences in function can be unique to each specific mutation, but all result in the formation of aggregated tau inclusions, also known as tangles, which is theorized to drive neuronal loss and brain atrophy.” Co-Founder, Linde Jacobs, shared information on the organization’s beginnings and her hope for engaging patients, care partners, and all that are impacted.
In May of 2023 a group of MAPT families connected for the first time at The Association for Frontotemporal Degeneration (AFTD) Conference during a session on genetics. These families continued to meet following the conference to stay connected on their journey. That same year, the New York Times Magazine publishes The Vanishing Family by Robert Kolker. These groups connected to create Cure MAPT FTD. Now, Cure MAPT FTD has eight members on their Executive Team that span a wide range of expertise areas, such as Outreach & Support, Brand & Communications and Research Advocacy. Alongside their Executive Team, Cure MAPT FTD has a Scientific Advisory Board consisting of renowned FTD experts. For more information on Cure MAPT FTD’s Executive Team and Scientific Advisory Board, click here.
Currently, over twenty-seven kindreds across eight countries comprised of families affected by the disease are represented through a variety of advocacy initiatives. Leaders of the Executive Team build relationships with researchers and scientists through participation in FTD research while also advocating for the research process to government officials. Team members of Cure MAPT FTD attend several events and conferences each year to spread awareness of the organization and connect with individuals that may be affected by the MAPT gene.
Cure MAPT FTD offers an introductory call for all that may be curious about the organization. In this introductory call, one to two members of the organization talk interested individuals through Cure MAPT FTD and what the organization can do to assist. Cure MAPT FTD hosts All Family Meetings once a month to connect their network of families with professionals in the field of research, other organizations working to spread awareness, and other members of the FTD community to share their personal stories. The goal of these monthly meetings is to be a resource for the community. “No one is alone,” Linde states, “Everyone can be connected and supported.”
On their website, Cure MAPT FTD outlines information on International FTD organizations, links to related and relevant research opportunities, information on support groups, conferences and events, details on the Co-Founder’s personal stories and much more. For those interested in getting connected with Cure MAPT FTD, you can email the organization at hello@curemaptftd.org or visit their website here.
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