Linde Lee Jacobs brings patient advocacy, personal journey to UW–Madison

A portrait taken outdoors in front of trees of Linde Lee Jacobs, her mother and her sisters.
Linde Lee Jacobs (right), her mother and her sisters. (Photo courtesy of Linde Lee Jacobs)

By Jordana Lenon
May 3, 2024

Honoring her mother, while helping advance research on frontal temporal dementia (FTD) is Linde Lee Jacobs’ mission.

It’s what recently brought her to the University of Wisconsin–Madison, including a visit to the Wisconsin National Primate Research Center. There, she learned about the work of Marina Emborg, professor of medical physics in the School of Medicine and Public Health (SMPH), who directs the university’s Preclinical Parkinson’s research program and studies other neurological degenerative diseases.

Jacobs’ mother, Allison McCormack Lee, passed away from FTD in 2021, at age 62. Linde and her two sisters also carry the disease-causing mutation in the MAPT gene. The MAPT gene encodes the information for neurons to produce tau, a protein that helps assemble the neuronal skeleton.

“FTD can strike while people are younger, often when raising families and managing a career,” Lee Jacobs said. “Diagnoses can take five years or more. In addition, there is a lack of awareness and training with this disease.”

Navigating the System

A registered nurse who lives in St. Paul, Minnesota, Lee Jacobs learned when she was 22 that her mom had FTD. “I had to learn very rapidly what was happening and how to help her, how to navigate a system that is not adequately set up for people under the age of 65 to have neurodegenerative diseases. Doing all that as a young adult — starting first jobs, dating, getting married, having children — all while having a sick mom was overwhelming.”

“Our healthcare system has so many roadblocks to advocating for a loved one until a diagnosis is made,” she added. “I understand the laws of HIPAA and I know they need to be there, but there’s also something that needs to change — where family members are coming forward to health care providers with concerns and the providers listen, engage and learn a little bit more. Initially, my mother was diagnosed with obsessive compulsive disorder, but it’s uncommon to get that diagnosis in your 50s. So when there is a new onset of psychiatric concerns, maybe a neurological reason should be considered. Listening to the family and asking for opinions of close loved ones could provide clues.”

Read more about FTD, Lee Jacobs and her family, and visit her advocacy site at Cure MAPT FTD.

Linde’s Visit to UW–Madison

Lee Jacobs related that she met Emborg last June in Boston at the Tau Consortium conference, where Lee Jacobs had been invited to give a talk. “The consortium is an ongoing collaborative group to move research forward by sharing what you’re learning and seeing in your lab and collaborating with other labs across the country,” she said. “It’s a nontraditional way of doing medicine and science. Its sole purpose is to speed research forward toward finding cures for tauopathies. Marina introduced herself to me after my talk and said, ‘I have MAPT monkeys.’ I said, ‘You do?’ and a lab invitation followed.

Lee Jacobs had never visited a research lab. She had spoken with scientists and students from the University of California San Francisco, and shared that UCSF professors said to her, “You sparked the students to think differently, to do things differently.” So, while at UW–Madison on April 10, she presented her journey to graduate students in the Neuroscience and Public Policy Program, led by Barbara Bendlin, professor of medicine, SMPH. Lee Jacobs’ visit was sponsored by that program and the Wisconsin Alzheimer’s Disease Research Center. She met with Emborg and Bendlin, as well as Karla Ausderau and Kristen Pickett, both associate professors of occupational therapy in the School of Education. All of them are deeply involved in tauopathy research.

Lee Jacobs described her visit as “refreshing and amazing.” In her words:

“I left UW–Madison feeling refreshed and content, like I was in the company of friends. It was an incredible experience! I was able to enjoy a different aspect of advocacy apart from attending conferences. This trip allowed time for up-close learning, observing, more questions and answers, and getting to relate with others on a human level. Plus, the science side of me was thrilled to see a research lab and some of the work that is involved behind the posters and abstracts. I have a huge appreciation for all those who work behind the scenes but are just as integral in the results. The experience was beyond insightful, and it was just amazing to witness the process in which any of it comes to fruition.

“As far as my experience with the rhesus monkeys, I was really trying to absorb everything, take it all in, while making sure I wasn’t causing them distress,” she said. “I was also able to make comparisons between the neurocognitive testing that I witnessed being performed, and the testing that I have undergone. I could empathize with the monkey, because I have been in a similar testing situation in which the rules are changed in the middle of a test, and you have to adapt to determine what these new rules are. There were so many moments where things clicked for me! Marina is seeing things in the monkeys that do translate into humans.”

“The scientific community has been so welcoming,” she added. “If there is nothing for me when I start having symptoms, I know that they are not going to leave my family stranded. I have built such a strong team around me. I have my sisters, I will be well looked after, and my children and my husband will have support, too. So many people go through this alone.”

What’s next?

Scientists don’t always share their cell lines across labs, Lee Jacobs explained. “Getting access to cells is difficult — there is not a lot in the repository.” She related that researchers are now working together to make this process easier: “My sisters and I are planning to provide skin biopsies for creating induced pluripotent stem cells of our family’s line. These cells could be disseminated to labs doing CRISPR editing, stem cell research, and small molecule drug therapy. People want these samples; it’s just a matter of finding the funding to do it and doing it within the protocol.”

Lee Jacobs will continue to “get out there and meet people and talk to people.” She added, however, that patients often must be cautious with advocacy because, “depending on your line of work, there can be discrimination acknowledging that you have this genetic predisposition: “People can start scrutinizing behaviors differently.”

For her, the journey will continue in many ways. “Caring for my mom truly changed how I care for patients,” she said. “It changed how I see people in the public eye as well. I’m here to learn, absorb from the lab side of things as well as the human side, and give a story. It’s a commonplace story — when you’re seeing people out in public and they are acting a certain way, it’s not about jumping to conclusions, it’s about learning about the people behind these conditions.”

When asked about her greatest accomplishment through her advocacy work, she replied: “I feel that every time I get to talk about my mom, it’s an accomplishment. I’ve been able to meet so many different people. Smaller interviews have led to larger interviews, and to more documentation of our personal histories and stories. There is so much I can leave behind for my kids. With all that I have learned, I’ve been given this opportunity of foresight. If my mom had known what was going to happen to her, I know she would have done things differently. It is so much of a gift to have this foresight and to be able to tell others about it and to stimulate changes.”

Life isn’t a longevity contest, it’s a testament of quality.
– Linde Lee Jacobs