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By Danny Yarnall

A young man suffers a horrific car accident one night in 1999. “Mr. R” is kept in a hospital bed for more than a month while doctors deliberate on his condition. He does not respond to commands nor any tests to stimulate his senses. He’s released back into the care of his parents and spends the next 12 years in a “vegetative” state, visited by a revolving door of neurologists. He has sleep/wake cycles, but doctors can’t find any evidence he’s aware of the world around him.

But in a 2012 study at the University of Western Ontario, Mr. R is put into a neuroimaging scanner and asked to think of either playing tennis or visiting the rooms of his home for 30 seconds at a time. Remarkably, his scan lights up. A man once thought to be completely unaware is responding to commands, not physically, but with his mind.

Mr. R highlights the importance of using brain scans to find consciousness in brain-injured patients, the subject of a paper published in Bioethics by Andrew Peterson, PhD; Adrian M. Owen, PhD; and Penn Memory Center Co-Director Jason Karlawish, MD. The paper analyzes the benefits and harms of using neuroimaging to assess brain-injured patients as our understanding of consciousness evolves.

Richard Bartholomew recounts his time as a caregiver in a conversation with Penn Memory Center Co-Director Jason Karlawish, MD, during the second of two lectures designed to outline the history and present of Alzheimer’s Disease care to the recently opened Roybal Center on Palliative Care in Dementia.

By Danny Yarnall

Richard Bartholomew struggled to wrap his head around the doctor’s words. 

He wasn’t even sure what those words meant, at least in terms how they would change the granular, day-to-day life he shared with his wife, Julia Converse, for the last 20 years. 

But there it was, straight from the mouth of the neurologist they sought after Converse struggled to learn a new computer program in late 2007. Decades of studying fine art, passionate work in museums around the country, and more than 30 years of working at Penn did not stop what came back from that brain scan. 

Converse, about to turn 62, had early-onset Alzheimer’s. 

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.