After a hearty brunch at Beatrix’s in downtown Chicago, Melanie Zhang and Joseph Pyle walked into the Feinberg School of Medicine’s student lounge – oboe and flute – and began working out.
Zhang, a first-year medical student, and Pyle, a retired MD with dementia, met earlier this year through Northwestern’s Glen and Wendy Miller Family Buddy Program, a program that brings first-year medical students with those Living with – stage dementia for an academic year.
“We came together through a love of music,” Zhang said.
On May 5, the Friends Program celebrated its 25th anniversary at Northwest University’s 28th annual Alzheimer’s Day, which brought together more than 400 researchers, clinicians, community members, research participants and advocacy groups to share work related to Alzheimer’s disease.
The event, which took place at the Robert H. Laurie Center for Medical Research, included a poster session, a seminar on quality of life, and a keynote speech from Rush University Professor Lisa Barnes on the social and cultural impacts of aging. This event was organized by the Mesolam Center for Cognitive Neurology and Alzheimer’s Disease.
Sarah Rose Dunlop, a third-year doctoral candidate in Neurology, presented her work at the event along with nearly 50 other presentations related to aging and dementia related to Alzheimer’s disease.
“Participation in events like this is the foundation of my work and it makes full circle what drew me to neuroscience in the first place,” Dunlop said.
Dunlop said that while her work is “very molecular, in the lab and on the bench,” she keeps her work centered around trying to help find treatments and treatments for Alzheimer’s disease and related dementia.
Jelena Pejic, clinical trial research coordinator at the Mesulam Center, said she is excited to be part of trials studying anti-amyloid, an anti-brain plaque-forming protein, and is hopeful for the future.
“Advances in memory research are critical because we currently do not have any treatment or preventative medications to help with Alzheimer’s disease,” Bejek said.
The poster session, which took place before Professor Lisa Barnes’ speech, also gave CBOs time to connect with families with Alzheimer’s disease.
The Lorenzo Home, founded by Diana Chula Causes, supports families dealing with early Alzheimer’s disease—particularly children whose parents are coping with the diagnosis—and brings them together to build community and hope.
Couse said many people feel comfortable connecting with other families who share the same experience.
“We are an invisible group. We are an invisible, misdiagnosed, undiagnosed and under-resourced sector in the larger Alzheimer’s community. There are a lot of us,” Koss said.
Communication, from institutions of care to individuals and from hospital to patient, is critical, said Sydney Orr, a research study assistant at the Missoulam Centre.
Orr said her work includes informed consent and clinical trial recruitment, along with providing patients with the information they need to make a decision.
“We have many services that we offer at the Maisalam center, in terms of providing care or supporting the participants, because it is not easy,” Orr said.
Shreya Kanchan, Feinberg’s research coordinator, said she was pleased to see the research participants attend the conference. Her work includes helping people with primary progressive aphasia regain their language skills, as it is a syndrome that affects communication and can be caused by Alzheimer’s disease.
“It’s important for other participants to come and see all the posters, and also to see in real time how much impact their participation is — how much it really makes that difference,” Kanchan said.
The Alzheimer’s Disease Research Center in Feinberg was founded 26 years ago. Last academic year, it was awarded its sixth round of funding and received a $20 million grant for its SuperAging research program, which studies individuals 80 or older with outstanding memory performance.
Zhang and Pyle concluded the conference with a performance of five pieces, including a polka-dot which attendees were clapping and tapping with their fingers on the desks of Hughes Hall.
“This is the power of music to bring people together,” Zhang said. “This program has really helped me contextualize all of my work and give it meaning.”
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