Penn FTD Center 2025 Caregiver Conference Keynote Speaker - Linde Jacobs

A native Midwesterner, Linde is a practicing RN, wife, and mother to two beautiful young daughters. She is also known as a fierce and outspoken advocate to find a cure for Frontotemporal Dementia (FTD).

She is a second-generation caregiver, who assisted caring for her grandmother while still at a very young age. Following her grandmother’s death, Linde soon became her mother’s primary caregiver, when her mother subsequently developed symptoms of what turned out to be a genetic form FTD caused by a MAPT gene mutation, resulting in the most common form of dementia under the age of 65.

At just 22, Linde balanced caring for her mother while beginning her first professional nursing job, starting a family and then becoming a mother herself. Shortly after her mother’s passing at the age of 62 in 2021, Linde learned that she too would face the FTD journey again, after genetic testing revealed that she was also a positive genetic MAPT mutation carrier, as were her two sisters.

Fueled by failures of her family’s past while also fearing for the years ahead, Linde began to take control of her future. She co-founded a non-profit organization, Cure MAPT FTD, is a board member on End The Legacy, engaged in research studies across the United States, offered insight to government officials on current systemic issues at the NIH and FNIH, and has been a featured guest in multiple articles, conferences, podcasts and research institutes. She has most recently been the focus of a cover story in The New York Times, and will be appearing in an upcoming PBS documentary on dementia. She has spoken at numerous universities, health care facilities, pharmaceutical companies, nonprofit organization conferences, and keynote at scientific conferences.

All these efforts are done in honor of her mother and her grandmother, and to pursue a better future for her two young daughters, who are at-risk for inheriting this same genetic mutation from her.

The Penn FTD Center team asked Linde Jacobs questions in anticipation of her keynote presentation at the 2025 Penn FTD Center Caregiver Conference. Read the conversation below!

1. If comfortable sharing, what has your experience been with FTD and other related dementias?

I have been a registered nurse for over 15 years so I have had many experiences working with patients and families who have been diagnosed with dementia and related disorders all throughout my career. However, I personally have had someone in my family with a dementia diagnosis since the time that I was born. My grandmother Beverly had symptoms of FTD when I was born, until she passed away in 2006. Then just 3 years later, my mother started having symptoms of FTD at the age of 50. I served as her guardian, health care proxy, and caregiver during the duration of her disease starting at the age of 22. Since that time, all of my mother’s siblings have also been diagnosed with FTD impacted by a MAPT mutation. Both my sisters and myself have all undergone genetic testing and have all tested as positive carriers for a MAPT mutation, which puts all 6 of our children at risk for having inherited the autosomal dominant gene.

2. What is Cure MAPT FTD?

Cure MAPT FTD is a nonprofit organization created by impacted family members to mobilize and raise awareness of the MAPT genetic mutations causing Frontotemporal Dementia (FTD), assisting a global network of families, and advocating for clinical trials with the ultimate goal of finding a cure. The organization created a centralized space for researchers, clinicians, other non-profit partners, and industry to locate families impacted by MAPT mutations and to work in a proactive approach to lead further development of therapeutic potential through our three main pillars: advocacy, awareness and connection.

3. What conversations sparked the interest in you and the other Co-Founders to create Cure MAPT FTD?

The beginnings of Cure MAPT FTD occurred at a caregiver education conference in 2023 after attending a brief, genetics focused breakfast in which industry was invited to give their trial updates and stats. It just so happened that there were 5 MAPT impacted families in the room, hearing updates on the other genetic forms of FTD, but nothing for MAPT. It was then realized that we as families are going to be our own biggest advocates and that if we would like to see trials or changes in our lifetimes, we will have to be the ones to fight for it. We realized the power in mobilizing and getting ourselves organized so be a louder, cohesive voice and to be prepared for when a trial arises, we will have ready participants.

4. How has your journey of advocacy changed since you started speaking out about FTD?

When I received my positive genetic testing results, I realized that my mother’s past would be my future, and that was a reality I couldn’t idly sit by and accept. I realized that if I want a different future for myself, I have to proactively use the time I have before this disease decides I am next. I still don’t know that I could state that what I have done falls under the scope of advocacy, but I knew that I wanted to have answers and understanding. I didn’t want to go into the next generation of this disease with little to no understanding. What I didn’t realize at the time was that by reaching out to the scientific and research community, asking questions, speaking to multiple clinicians, and getting involved in research- is that I would find who my mom was before her disease because now I can differentiate Allison [my mother] from the FTD. I have also found a new version of myself in this journey, and look at the future with hope, instead of horror and fear. I never envisioned anything that has transpired over the last 3 years ever occurring in my life, and sometimes I wonder if all the time and effort are worth it- questioning if I am wasting my precious time? But, every time I question stopping, something or someone propels me forward to keep pushing.

​The Penn FTD Center’s Annual Caregiver Conference is for those diagnosed with frontotemporal degeneration (FTD), and their caregivers, family, and friends to access information and support. With presentations from leading experts in neuropsychology, clinical care, genetics, cognitive neuroscience, and more, attendees will hear the latest on innovative treatments, diagnostics, and practical caregiver strategies. The Penn FTD Center will host the 2025 Caregiver Conference on Monday, November 3rd at Smilow Translational Research Center. This conference is offered free of charge. Register for the conference here!