An Alzheimer's Disease Research Center
By Meghan McCarthy
Beth Segaloff, LCSW, is no stranger to grief.
Years ago, Beth found her soulmate, Ben Sklaver, at the beach community where both of their families lived. Although their families had been connected for years, the two didn’t become a couple until spending July 4th together in 2008.
Ben and Beth
“I was blessed enough to have the magical moment that all people hope for,” said Beth. “I met Ben, and it was like we’d been waiting for each other our entire lives.”
By Meghan McCarthy
A University of Pennsylvania-led research study suggests that a rare genetic variant called TREM2 increases one’s risk of Alzheimer’s disease (AD) but also causes atypical symptoms. This finding could have a significant impact on how AD is diagnosed.
Someone living with AD typically seeks out a diagnosis after reporting concerns about memory. But someone with the TREM2 variant is more likely to notice issues with memory later on in the disease course. Instead, they may first notice difficulties with language, vision, and mobility or changes to their personality.
“We were able to demonstrate, with the largest brain autopsy study of cases with this genetic risk variant to date, that TREM2 variants are associated with these atypical Alzheimer’s disease symptoms,” said Edward Lee, MD, PhD, co-associate director of the University of Pennsylvania’s Alzheimer’s Disease Research Center.
These findings have important implications for the way AD is diagnosed, as patients with TREM2 may be misdiagnosed with other neurodegenerative disease, said Kim Boram, MD, lead author of the study.
As one of the most popular research subjects at this year’s Alzheimer’s Association International Conference (AAIC), machine learning is at the forefront of Alzheimer’s disease and related dementia (ADRD) innovation.
While a seemingly complex topic, machine learning can be thought of as math class for computers. Like students, computers are trained to use different methods, or formulas, to solve a problem.
Graphic designed by Meghan McCarthy
Deia Schlosberg
By Meg McCarthy
When her father was diagnosed with a genetic form of frontotemporal dementia (FTD), Deia Schlosberg felt her only choice was to get genetic testing.
An Emmy award-winning filmmaker, she has spent her career exposing the reality of climate change and advocating for environmental justice.
Schlosberg is a truth teller. Seeking genetic counseling and testing was the path forward to finding her truth.
“There was zero question for me,” said Schlosberg. “I wanted to find out.”
By Meghan McCarthy
The average African American is twice as likely as a white adult to develop dementia, yet is 35% less likely to be diagnosed with Alzheimer’s disease and related dementias (ADRD).
This disparity is a result of generations of mistreatment, mistrust, and discrimination. It serves as one of many examples which illustrate the need for change within the ADRD space.
For Victor Ekuta, a 2022 Penn Memory Center (PMC) Clark Scholar, personal experience with such discrimination launched a professional passion for health equity.
By Meghan McCarthy and Cait Kearney
The Penn Memory Center’s (PMC) popular companionship program, Time Together, previously known as Time Out, received funding that will soon make the in-home program available to older adults in Philadelphia.
PMC received this federal funding through the 2022 Community Care Corps Grant.
“We are pleased to make this award to the Penn Memory Center,” said Paul Weiss, president of The Oasis Institute, which administers Community Care Corps. “Their excellent intergenerational model was chosen over other outstanding programs across the country.”
By Meghan McCarthy
(Left to right – top row) Crystalle Hutchins, Sebleh Alfa, Training Coordinator Xandria West, Alzheimer’s Disease Center Administrator Kathy Jedrziewski, Alexis Visco, La’cendria Pulley, Devon Lawson, Laura Agyemang (Bottom row) Asa Sam, Abdul-Izzaz Niangane
Asa Sam has spent only about two months with the Penn Memory Center (PMC), but the experience has made an impact on the rest of her professional life.
“I can faithfully say that PMC has already impacted my future,” said Sam, a 2022 Summer Scholar. “Being a part of this program was a way to verify and solidify my career path of neurosurgery, while also keeping my mind open to multiple paths in geriatrics and remaining engaged in Alzheimer’s research.”
This past summer, six undergraduate students joined PMC for mentorship, clinical shadowing, and exposure to career options within the field of Alzheimer’s disease and related dementias (ADRD).
The program invites undergraduate and graduate students who identify as Black or African American to apply, and encourages previous students to return if interested.
A screen capture from a BioArctic video describing the mechanism of BAN2401, or lecanemab.
Drugmakers Eisai and Biogen announced yesterday the experimental drug lecanemab helped slow cognitive decline in people living with Alzheimer’s disease (AD).
“This is an extremely encouraging development,” said Penn Memory Center (PMC) Co-director David Wolk, MD. “The observed reduction in decline may reflect meaningful differences in function for a significant portion of patients.” More details are needed to evaluate the drug confidently, he added.
PMC Co-Director Jason Karlawish hopes that the announcement marks a pivotal milestone in Alzheimer’s disease history, but clarifies that his hope is based on a press release.
“Science relies on the open and unbiased exchange of information, and three key means to achieve this are publishing results in a peer-reviewed journal, presenting the results to open scientific forums with ample time for discussion and debate, and making the data available for confirmatory analyses,” he said. “I look forward to these events.”
By Meghan McCarthy
From reducing stigma to disclosing disease biomarkers, Claire Erickson, PhD, MPA, hopes to improve lives by improving the care given to older adults.
Dr. Erickson recently joined the University of Pennsylvania as a postdoctoral researcher. As a member of the Penn Program on Precision Medicine for the Brain (P3MB), she will continue her work on biomarker disclosure for patients with Alzheimer’s disease (AD).
In AD, biomarkers are hallmark molecules such as tau or amyloid that help clinicians with diagnoses. Biomarker disclosure is the process of informing patients about the results of their biomarker testing.
Claire Erickson
Dr. Erickson began work on biomarker disclosure for cognitively unimpaired participants while pursuing her PhD at the University of Wisconsin-Madison. As a part of the Neuroscience and Public Policy dual degree program, she also focused on the policy implications of her work. While putting together her thesis, Dr. Erickson collaborated with P3MB researcher and expert in biomarker disclosure Emily Largent, JD, PhD, RN, on her thesis.
“I am delighted that Dr. Erickson has joined us at Penn, and am looking forward to working with her on pressing issues at the intersection of Alzheimer’s disease and policy,” said Dr. Largent. “Her recent article on the social and policy implications of preclinical biomarker disclosure highlights her unique scholarly perspective.”
By Meghan McCarthy
The morning of March 21, 2019, began unremarkably for Nancy and Mike Childs.
After waking up, they began their simple morning routine. Then they turned on the news, and their world shifted.
Reports informed them that the Phase III trial of the drug aducanumab run by Biogen and Eisai — a trial in which Mike was participating — had ceased, effective immediately. It was one thing to have their hopes of a successful treatment dashed without warning; it was another to have learned this news from the television.
After Mike Childs was diagnosed with mild cognitive impairment (MCI) in 2014, he decided to enroll in the aducanumab trial, which aimed at slowing the progression of symptoms from MCI or Alzheimer’s disease (AD). Mike enrolled with hope for himself and the future of his disease.
The trial became more than a potential treatment; it became a community for the Childses.