Building Bridges: The Outreach Team at Memory and Aging Program"
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How Athena Lavoie and Lulu Malko are Bringing Brain Health Research to Communities Across Southern New England
Every day, the Memory and Aging Program's Outreach Team works to close the gap between groundbreaking Alzheimer's research and the communities that could benefit from it. Leading this effort are Athena Lavoie, BS, Outreach Manager, and Lorrance "Lulu" Malko, BA, Senior Outreach Coordinator: two women whose combined passion, expertise, and personal connections to the disease drive them to make a real difference in the fight against dementia.
Athena joined the Memory and Aging Program (MAP) in March 2018, initially managing the "Swab Squad," a team of volunteers who helped conduct cheek swab research throughout the community. Nearly eight years later, she now oversees all community-based initiatives and clinical trial referral strategies as Outreach Manager. Her grandmother was a patient of Dr. Stephen Salloway’s and passed from Alzheimer's in 2018, giving Athena a deeply personal understanding of what families face when considering participation in research.
Lulu's journey began in March 2020, just weeks before COVID-19 shut down the world. On her very first day, she boarded a plane for a site start-up meeting for the U.S. POINTER study, which became her first research project. By the study's completion this summer, Lulu had risen to Site Project Manager, helping to bring the landmark trial across the finish line. Her grandmother lived until 97 with dementia, and Lulu helped care for her at home alongside her parents – an experience that shaped her commitment to this work.
"Lulu is truly the best partner to have," Athena says. "We work so well together, but also have our own independent projects we feel passionate about. Together we're reaching all corners of the state as well as Massachusetts and Connecticut to educate the public on brain health and recruit for MAP's enrolling studies."
For Lulu, the partnership is equally meaningful. "Athena has been a tremendous support since I joined MAP, both professionally and personally. We have a great rhythm and understanding of each other's responsibilities, so we can easily step in for one another when needed, especially when one of our kids decides to get sick!"
The team's work has evolved significantly over the years. While they no longer offer cheek swabs in the community, they now focus on studies that provide risk assessment through simple blood tests – an exciting advancement in Alzheimer's research. They continue to work with wonderful volunteers from Brown University and URI, maintaining the spirit of community engagement that has always defined their outreach.
One of Athena's proudest achievements is the Community Memory Screenings program, which she developed as part of the Care New England Leadership Development Program. "I was receiving feedback from the community that people wanted a longer memory screening than what they received at their annual physical, but they didn't want a full neuropsychological evaluation because they only had minor concerns," Athena explains. Working with MAP's neuropsychologists, she created screenings that can be administered at senior centers and community organizations, providing people with meaningful feedback about whether their memory and thinking scores fall in a normal range or if a more thorough evaluation might be helpful.
The team also hosts annual events that have become community fixtures, including the Black and Aging Health Fair in partnership with the West End Community Center in Providence. These events reflect their commitment to reaching underserved communities and building trust in research.
For Lulu, one of the biggest challenges is building trust in research, especially in communities with valid reasons to be wary due to historical injustices. "We're working hard to rebuild that trust and ensure that everyone has a seat at the table, because treatments must work for everyone," she says. In her words, the most rewarding part of her is the people. “Meeting our participants and patients. They give so selflessly, often not for themselves, but for future generations. Their commitment inspires me every day."
Athena shares this sentiment. "The most impactful experiences are always when I see someone that I met at a community event walking through our program's doors to participate in research. There are so many people who are benefiting from their participation in this program who may have never heard of MAP or considered research before attending one of our presentations.”
Both women understand the deeply personal nature of decisions about learning one's Alzheimer's risk. "It's a deeply personal choice to make," Athena reflects. "Some feel that knowledge is power and early intervention is key. For others, it might cause too much worry and anxiety to learn their own risk. Each person has their own unique story, and it is really a privilege to listen and help them in this process."
With the recent positive results from the U.S. POINTER study – which Lulu helped shepherd from start to finish –and the potential establishment of Rhode Island's first Alzheimer's Disease Research Center through a grant submission to the National Institute on Aging, the future looks bright for both the team and the communities they serve.
"We're thrilled about the ADRC grant," Lulu says. "This would unite many key organizations across the state with one shared goal: preventing and treating Alzheimer's disease. We expect to hear results in the spring. Fingers crossed!"
For both Athena and Lulu, balancing demanding careers with family life (Athena has two daughters, ages 6 and 3, while Lulu has a four-year-old daughter, Mila), adds another dimension to their work. "I can appreciate the fact that people are multi-tasking and taking on a lot day to day," Athena says. "No matter the duration, participating in research is still something being added to the plate, and I hope our research volunteers know just how meaningful their time is to us!"
When asked what message they would most want to share with community members, Athena says, "Let's talk about what you're looking to get out of research. I love piecing together what study options people can consider based on their health, age, family history, and interests. Every person and story is different, but we are here to help find the option that fits best."
Lulu adds, "Participating in research is one of the most meaningful gifts you can give – not only for yourself but for future generations. I often think about my daughter, Mila, and how incredible it would be if, by the time she's an adult, Alzheimer's could be prevented or treated because of studies we're conducting today."