An Alzheimer's Disease Research Center
Penn Memory Center Scholar Emily Largent, JD, PhD, RN, was recently named the Emanuel & Robert Hart Assistant Professorship of Medical Ethics and Health Policy.
“It’s an honor to be the new Emanuel & Robert Hart Assistant Professor of Medical Ethics and Health Policy,” Dr. Largent said. “I’ve had the pleasure of meeting Robert Hart and his wife, Ineza, on several occasions and am so grateful for their support.”
On a November Thursday morning, Nancy Fuhrman reported to the Perelman Center for Advanced Medicine for a full shift of work.
But Fuhrman is not employed by Penn Medicine; she is a participant in the Aging Brain Cohort study who scheduled a year’s worth of substudies into a single day.
Penn Memory Center neurologist Roy Hamilton, MD, MS will be taking a leave from his PMC clinical duties from January until June as he launches a new center at the University of Pennsylvania devoted to stimulating the human brain.
The new Brain Stimulation, Translation, Innovation, and Modulation Center (brainSTIM Center) has been a goal Dr. Hamilton has been working towards in the two decades since he started working in the field of neuromodulation, he said.
“I’m humbled and deeply inspired,” said Dr. Hamilton of the opportunity to start the center. “I’m truly excited to take a leading role in these efforts.”
Penn Memory Center Co-Director Dr. Jason Karlawish, MD, recently testified on the state of Alzheimer’s and dementia research and care in Washington, D.C. before the Senate Finance subcommittee on health care.
Dr. Karlawish spoke about the progress made in understanding Alzheimer’s disease in the past four decades, from a disease surrounded in confusion that developed into a “gothic horror story” to a disease that can be diagnosed non-invasively and understood by families and physicians alike. He was joined by medical professionals, researchers, and caregivers presenting the barriers and difficulties in Alzheimer’s care today.
“I am sad however that there are still too many persons living with dementia and their families who are telling the same stories told some 40 years ago,” he said in his remarks to subcommittee chair Patrick Toomey (R – PA) and ranking member Debbie Stabenow (D – MI), who led the hearing. The subcommittee on health care focuses on Medicare and Medicaid spending and health programs financed by a specific tax or trust fund.
New research shows a unique strain on a generation of Americans caring for both adult parents and children in their home as they start their prime earning years.
The report comes from the National Alliance for Caregiving (NAC) in partnership with Caring Across Generations, dubbing the group of 11 million Americans “the “sandwich” generation of caregivers for their responsibilities juggling work, parenting, and caregiving, adding often unsupported financial and emotional strain.
Editor’s Note: The following is an excerpt from a column authored by Penn Memory Center Co-Director Jason Karlawish for statnews.com.
In histories written about Alzheimer’s disease, 2019 will turn up as a landmark year, one in which researchers, clinicians, patients, and their families were whipsawed from crushing despair to giddy optimism.
The year unfolded with a string of disappointments. One of the biggest came on March 21 when Boston-based Biogen announced it had pulled the plug on two clinical trials of aducanumab, a promising treatment for individuals with Alzheimer’s disease. The drug had failed a “futility analysis,” meaning it would not be able to achieve its objectives. More bad news came in the weeks and months to follow. An entire class of drugs called BACE inhibitors (pronounced “base” as in baseball) had failed.
By the annual international meeting of Alzheimer’s investigators in Los Angeles in July, a pervasive disappointment was enmeshed with embarrassment, heightened by the meeting’s timing on the 50th anniversary of the successful Apollo mission to the moon. A half a century ago, we were able to send someone to the moon, have him walk about, and return home but, despite all our time and effort and money since then, despite all the advances in genomics, proteomics, and other “omics,” despite precision medicine, we haven’t been able to make a dent in this disease.
Five months later, at the Clinical Trials in Alzheimer’s Disease (CtAD) conference on Thursday, December 5, I and other Alzheimer’s researchers gathered once again in California. This time the mood was giddy. The crowd in the Indigo ballroom at the San Diego Bayfront Hilton behaved more like a gathering at an awards ceremony than an early morning session at a scientific meeting. There were hugs, laughter, and backslaps.
Why the change? Biogen had somehow flipped the switch on aducanumab. According to its reanalysis of the clinical trial data, aducanumab wasn’t a flop but a success, and the company had decided to ask the FDA to approve aducanumab for the treatment of Alzheimer’s disease.
Early in 2020, Biogen will re-open study of aducanumab, a drug that targets brain amyloid, for the treatment of Alzheimer’s disease.
On December 5, at the Clinical Trial in Alzheimer’s Disease (CTAD) meeting in San Diego, California, Biogen scientists discussed the data supporting their reversal of March 2019 announcement to end study of aducanumab. The decision was driven by results from late-study changes in dosing in the ENGAGE and EMERGE studies (see reporting from STAT).
Penn Memory Center (PMC) Executive Director Felicia Greenfield appeared on NBC10 recently for an interview with PMC patient and former Temple University professor Jeff Draine.
The two discussed his early-onset Alzheimer’s disease and the importance of positivity after receiving a diagnosis.
“Improving a person’s quality of life is the best thing we can do right now, not only for the person with the diagnosis but also for their family members,” Greenfield said.
All adults, regardless of cognitive status, should be a brain-healthy diet (“the more colors on your plate, the better,” Greenfield said) and should seek an evaluation if memory problems go beyond ordinary.
Bill Lyon, the romantic, finally found his sunset.
It was the fall of 2017 when I went out to visit Bill at his home, not as “the man in the white coat,” as I’d been dubbed in his columns, but as an interviewer looking to understand what made him so fearless.
Fearless, not just to accept the Alzheimer’s diagnosis I had given him four years earlier, but to shout it out from the tallest tower he could scale.
Fearless, not just to live with the loss of his cognitive abilities, but to put them on display to a world that had so treasured his mind for decades.
Fearless, to celebrate the circle of life and acknowledge his place in it.
“You pass along the baton, and you hope you’re leaving behind you somebody who can pick up and follow,” he told me that day.
A contest from the National Institute on Aging (NIA) has pushed app creators to focus on ways technology can improve the care and management of Alzheimer’s patients.
The Eureka Prize from the NIA awarded three teams on their efforts to create new apps and software designed to improve dementia care and care coordination. The contest, launched in 2018 to drive innovation in the dementia care space, fielded 33 applicants with submissions ranging from mobile apps to software platforms to pick the three winners to share $400,000 in prize money.