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In 2019, PMC held its inaugural “Night Out for Alzheimer’s Disease” at The Prime Rib in Center City. Thanks to the volunteers on our fundraising committee (above), the event raised more than $150,000 to support our research, social work programs, outreach, and training. Our guests’ generosity and enthusiasm inspired us to make the next event an even greater success, but we can’t do it alone.

Over the next year, we need to do the following:

• Find and reserve a venue

• Coordinate catering

• Find and secure a keynote speaker

• Plan additional entertainment

• Seek out corporate sponsors

• Collect raffle and auction items

• Gather donations and sell tickets

• Other tasks as needed

If you have experience with any of these tasks and would like to help build a strong foundation for the Penn Memory Center and its efforts, please apply to join our fundraising committee.

Applications will be accepted through February 29th, and the committee will hold its first meeting (either in-person or via teleconference) in mid-March. If you have any questions, contact Executive Director Felicia Greenfield at felicia.greenfield@pennmedicine.upenn.edu.

How would you respond to learning you have an elevated risk of developing Alzheimer’s disease? Whom would you tell, and what would you say?

To answer these questions, Penn Memory Center and affiliated researchers are working to conduct the REVEAL-SCAN (Risk Evaluation and Education for Alzheimer’s Disease – The Study of Communicating Amyloid Neuroimaging) Study.

By Sharnita Midgett

At the Penn Memory Center (PMC), research partners often are found near the MRI scanner. Less common, however, are stories of finding a life partner there.  

Yet that is the story of Myrna Roach and Donald Jackson. 

“He used to repair CT scan machines,” Roach, a former magnetic resonance imaging (MRI) tech, said in a recent phone interview with Jackson in the background. Laughing, she continued, “then he switched to MRI. He’s here correcting me.” During one MRI repair job, the two caught each others’ eyes, and a series of future repairs led to a relationship a year later. 

That was 45 years ago. The two have since retired, but MRI scans are still part of their story. Each has been in the Aging Brain Cohort (ABC) study for 15 years and had their latest MRI scan in January.

By Danny Yarnall

Imagine sitting in your car, engine idling in the parking lot of your doctor’s office, where she just finished explaining that you have “elevated” amyloid, a biomarker of Alzheimer’s disease. 

You haven’t noticed any memory problems, but she did say that this meant an increased but uncertain risk of developing Alzheimer’s disease. 

How would you react to this information?

Newly published research from the Penn Program on Precision Medicine for the Brain (P3MB) pulls back the curtain on what research participants thought, felt, and did after a similar scenario. Authors included Emily Largent, RN, JD, PhD; Kirstin Harkins, MPH; and Jason Karlawish, MD.

“As the science of Alzheimer’s disease biomarkers evolves, we would expect that biomarker testing will become increasingly widespread among people who are cognitively unimpaired,” said lead author Dr. Largent. “In anticipation of more widespread testing, it’s important to gather evidence to inform how clinicians talk to patients about biomarker results and to prepare patients for what they might expect.”

John Trojanowski, director of Penn’s Institute on Aging and Alzheimer’s Disease Core Center, has been studying Alzheimer’s at Penn for 30 years. (Credit: Penn Today)

By John Infanti, PennMedicine.org

The Center for Neurodegenerative Disease Research (CNDR) at the University of Pennsylvania has received a grant expected to total $18.1 million to study the underlying genetic mechanisms that cause Alzheimer’s Disease, Dementia, and Parkinson’s Disease to progress as well as how those mechanisms are related to each other and to the cell-to-cell spread of these disease proteins.

The grant, awarded by the National Institutes of Health’s National Institute on Aging (NIA), will fund four specific projects over the next five years through the NIA Penn U19: A Center on Alpha-Synuclein Strains in Alzheimer’s Disease and Related Dementias.

By Danny Yarnall

Penn Memory Center Scholar Shana D. Stites, PsyD, MA, MS was a featured guest on a recent episode of Minnesota Public Radio with host Kerri Miller.

Dr. Stites was joined by Peter Rabins, MD, MPH, in a discussion on how stigma affects people’s willingness to take novel early-detection methods for Alzheimer’s such as gene-testing for APOE4 or blood tests available to Americans on the horizon. 

Dr. Sites broke down how stigma and lack of treatment would make people think twice about discovering their risk for Alzheimer’s but highlighted the ability to make changes and preparations in life before the symptoms progress too far.

“There is that other question that is being answered by learning gene or biomarker result… ‘now that I know I’m more at risk and I’ll make more aggressive decisions about other parts of my life,’” Dr. Stites said.

Dr. Jason Karlawish speaks at a launch of the Roybal Center for Palliative Care in Dementia.

By Danny Yarnall

A new Roybal Center with ties to the Penn Memory Center will be the nation’s first to study palliative care of dementia patients. 

The new center — the Roybal Center for Palliative Care in Dementia — is led by Scott Halpern, MD, PhD, who is also the director of the Palliative and Advanced Illness Research (PAIR) Center. The University of Pennsylvania is the only university in the country with two such centers.

Researchers will benefit from a partnership with Genesis HealthCare, the largest owner of nursing homes in the U.S., to create “learning labs” for their pilot studies in nursing homes over the course of the five-year grant.

PMC Co-Director Jason Karlawish, MD, who is director of the Roybal Center Pilot Core and a member of the steering committee, presented on the history of Alzheimer’s treatment and care in a special lecture celebrating the launch. The purpose of the lecture was to familiarize the Penn Medicine community with the diagnosis and management of persons with dementia, including a discussion of the history and epidemiology of dementia, and the roles of family caregivers. Treatment, Dr. Karlawish said, is not solely working toward the goals of eradication or reversal of the disease, but promoting safe and effective management as well. 

By Danny Yarnall

Nancy Childs woke up on March 21, 2019, to upsetting news for her and her husband, Mike. The Alzheimer’s study sponsored by Biogen and Eisai for their drug aducanumab had been pulled. And the rug had been pulled out from under Mike, Nancy, and many other study participants’ feet. This was the first they heard of the study’s closure, and Penn Memory Center staff were racing to reach out to other participants to provide some guidance.

This haphazard system of communication is addressed by PMC Scholar Emily Largent, JD, PhD, RN; and PMC Co-Director Jason Karlawish, MD, in a new paper out in JAMA Neurology. The paper, “Rescuing Research Participants After An Alzheimer’s Trial Stops Early—Sending Out an SOS,” outlines current issues in participant notification following large-scale drug trials closure and identifies ways for all stakeholders to improve going forward.

Credit: @domsisti/Twitter

By Danny Yarnall

Neurology Today selected research from the Penn Program on Precision Medicine for the Brain as a part of an annual round-up of the year’s most important advancements in the field of neurology. 

The work — by PMC Scholar Emily Largent, PhD, JD, RN; PMC Co-Director Jason Karlawish, MD; and PMC Research Program Manager Kristin Harkins, MPH — studied attitudes of gene and biomarker disclosure study participants on physician-assisted-death (PAD). This caught the eye of Neurology Today’s experts for addressing an “absolutely critical” need to understand how genetic and amyloid biomarker disclosure affects patients’ plans for the future.