Helen was reluctant to take part of a clinical trial but after watching her mother and sister struggle with Alzheimer’s disease, she realized that participating in a trial was the next step for her. She has quickly become a favorite at the Center for Alzheimer’s Research and Treatment at Brigham and Women’s Hospital in Boston, understanding the hesitation people face with trial involvement. Helen is described as an, “ardent advocate for research who humanizes the experience”. Her passion for AD clinical trials is evident, as she speaks at BWH outreach events, participates in a forum about AD findings and research, and has interviewed with Boston Globe, CBS Nightly News, Neurology Now, Psychology Magazine and Prevention Magazine to shed light about the importance of removing the stigma and fear around clinical trials. Helen’s contribution to Alzheimer’s research doesn’t stop with her; she even convinced her sister to donate her brain to science.  

Debby O’Brien cared for both her parents while they had dementia. After they passed, she explored getting involved in Alzheimer’s research to ensure that families in the future would be spared what happened to her family. She responded to a TV advertisement for a study at Rhode Island Hospital, and after passing a screening process, was admitted as a participant for a study led by Dr. Brian Ott. Nowadays, Debby hosts an annual pig roast at her pasture in western Rhode Island for 200 Navy veterans in honor of her late father, who was a Navy captain. She extols the virtues of Dr. Ott and his team to everyone who will listen. 

When Anne Gruettner’s father passed away as a result of Alzheimer’s, it didn’t take long for Anne to realize what might be in store for her. While her fears were confirmed, her Alzheimer’s diagnosis from Dr. Brian Appleby came with an invitation to join the Study of Nasal Insulin to Fight Forgetfulness (SNIFF). “I jumped at the fact that I could stay alive longer,” Anne said.?“The team at UH became like a family to me. I thought, maybe I would be able to help people in the future.” Anne was faithfully accompanied to her trial visits by her wife Jan, who served as her study partner for the duration of the trial. Anne went into the trial with no expectations and counts it among the most fulfilling experiences of my life, in large part because of the trial team’s kindness and support. “I couldn’t get over how helpful, sympathetic, and encouraging they were,” she said. Her experience has motivated her to apply for a second trial and extoll the benefits of participation to her friends. 

Watching her mother decline to the point where she could no longer feed herself inspired Arleen Twist to help Alzheimer’s researchers find a cure in any way she could. Since her retirement in 2006, she has participated in four studies at the University Hospitals Brain Health and Memory Center. During the A4 study, she faithfully attended every scheduled trial visit for five years, not missing sessions even when she had pneumonia. “I build my life around these studies,” said Arleen. “It has been the most delightful experience that I can remember in recent times, the research team has become like a family to me.” She often brings reading material to her visits, but rarely gets to it because she prefers to chat with the University Hospitals staff. 

The Gallogly family had a suspicion no family wishes to have: that one of their family members may have Alzheimer’s. After David Gallogly retired from his accounting position at State Street Bank, he continued to work during tax season. “Dad would do taxes every winter, which required him to be recertified every year,” said his daughter Katie. “When he didn’t pass the recertification exam one year, he finally accepted, ‘You guys are right. I can realize this now.’” Katie heard about Dr. Brian Ott at Providence’s Rhode Island Hospital, from one of her coworkers whose mother Dr. Ott had evaluated for Alzheimer’s. Katie and her father made their way to Dr. Ott where David received a comprehensive neurological assessment. It revealed that David had Alzheimer’s and was a prime candidate for the Aware Study clinical trial. “Ever since then, it’s been amazing,” Katie beamed. “My dad’s completely accepted his condition and wants to be of service however he can.”  

When Trish Brown first visited a doctor at University of Kansas Med West, she had no idea she was about to begin a years-long journey into Alzheimer’s research. She took a memory test on her doctor’s advice, after which she was invited to join a trial at the University of Kansas Alzheimer’s Disease Center (KU ADC). “I immediately jumped at the opportunity,” Trish says. “I thought that if I participate in these trials, just think how fortunate I would be. I can help myself and other people at the same time. It was an easy decision.” As a KU ADC Ambassador, Trish is a tireless advocate for research, bringing her friends to talks and recruitment events.  

Several years ago, Nancy Curran began to notice problems with her memory. Her primary care physician suggested that she see Dr. Brian Ott, MD, director of Rhode Island Hospital’s Alzheimer’s Disease and Memory Disorders Center. Dr. Ott gave Nancy the diagnosis: She had a buildup of amyloid protein in her brain, a visible marker of Alzheimer’s?disease. Her first question, Nancy said, was “Is there any research?” A retired occupational therapist and daughter of a physician, Nancy explained that the practice of medicine has been a constant theme in her life, and she values research highly. Nancy, with her husband, Mike, as her study partner, proved to be a good candidate for the Stage 3 trial of a drug called aducanumab. Nancy wears a bracelet of purple beads – the color of Alzheimer’s awareness – linked with a silver medallion etched with the word “hope.” A dot of gold on the medallion represents her loving caregiver, her husband. “This bracelet says it all,” she said. “Hope is my mantra.” 

When Pam Moorby found herself losing her train of thought in her everyday life more than a decade ago, she assumed that the stress of her job was getting to her head. Pam’s quest for treatment took on renewed urgency when she was let go from her nursing job due to her inability to perform necessary tasks. Her search took her to Rhode Island Hospital, where a PET scan revealed that not only did Pam have Alzheimer’s, but the amount of built-up tau protein in her brain meant she was functioning far better than she should have been. “That’s when I began the process of volunteering for trials.” In the three years since her diagnosis, Pam has adopted Dr. Brian Ott—the lead researcher for her trial—and his team as her “second family.”  

When Mike Russo saw a TV advertisement in 2013 for a Rhode Island Hospital Alzheimer’s study, he jumped at the chance to join. His father had lost a battle with Alzheimer’s, and his brother had received a diagnosis of his own around the same time. Although Mike did not have a greater inherent risk for Alzheimer’s, his resolve to join an Alzheimer’s study did not waver, and he joined the Longitudinal Evaluation of Alymloid Risk and Neurodegeneration (LEARN) study. 

Joyce and Kermit Roberg have known each other since they were in 6^th grade and have been married for the past 57 years. Through the ups and downs of more than a half century spent together, Joyce’s Alzheimer’s has been the greatest challenge the couple has faced together. Joyce participated in the TRAILBLAZER study, which required her to receive monthly infusions. “I wasn’t thrilled at the prospect of getting infusions at first,” Joyce confessed, “but Dr. [Daniel] Hernandez and [Research Manager] Jeanette Wilson make me feel very comfortable. They encouraged me to ask in-depth questions of my doctor, which I might not have done before.” 

After a painful experience with her parents’ Alzheimer’s, Connie Lesko found herself feeling heartbroken for the Alzheimer’s patients who don’t have close family to advocate for them. She shifted her marketing career to focus on the senior living industry, where she has worked for the past fifteen years – including multiple stints at facilities that focus on Alzheimer’s patients. Connie is involved with the Byrd Alzheimer’s Research Center and Institute and chaired a major fundraising event. She is passionate about prevention, finding a cure, and a medication that can effectively treat Alzheimer’s symptoms, and knows that clinical trials are the key to finding answers. 

Barbara (Barb) is the 2019 Citizen Scientist Catalyst Award
honoree. She received an Alzheimer’s diagnosis several years ago
at Rhode Island Hospital (RIH) even though her primary care
physician had told her she had nothing to worry about. Her
connection with RIH continues today as a clinical trial participant in
one of their studies. Barb has been involved in fitness classes for
decades, so it was a natural fit for her and a friend to co-create a
memory fitness class program. Her business partner, Elaine
Sewatsky, is also her research study partner. Of Barb’s decision to
seek a second opinion at Rhode Island Hospital, she says, “I’m glad I
begged for help after my first physician told me not to worry. Every
second you lose matters.” Barb resides in Wakefield, RI.

Rochelle is the 2019 Citizen Scientist Cornerstone Award honoree. Her
involvement with Alzheimer’s clinical trials at the University Hospitals
Brain Health and Memory Center in Beachwood, OH spans 18 years
and counting. She has been a participant or research study partner in
seven trials and is a member of the University Hospitals Minority
Outreach Board, encouraging African Americans and Latinos—who are
disproportionately affected by Alzheimer’s but underrepresented in
research—to get involved. “Drugs that work for white men may not
work as well for black women,” Long says. “More of us in the African-
American community need to be involved in research to determine
the reasons for that.” Rochelle resides in Shaker Heights, OH.

Richard is the 2019 Citizen Scientist Champion Award honoree. His
passion for Alzheimer’s disease research advocacy stems from having
lost two of his grandparents to Alzheimer’s and having been the
primary caregiver to his uncle and his mother, both of whom died
from the disease. “Caring for my family members taught me how little
the health system knows about caring for individuals with dementia,”
Apple says. “If I happen to be in a study that’s successful, I’ll be in on
the ground floor of the treatment. It would be very positive to
postpone or avoid what I went through with my family.” He enrolled
in his first trial at Great Lakes Clinical Trials in Chicago, IL immediately
after he retired and has participated in four studies overall. Richard
resides in Rockford, IL.

After watching her Aunt Mary suffer from Alzheimer’s disease, and being diagnosed with the disease herself, Kaye began to seek opportunities to learn more about dementia through support groups and educational meetings within her community. At one of the local seminars she attended, the Intercoastal Medical Group Research Manager, Jeannette Wilson, made a presentation about Alzheimer’s clinical studies; less than a year later Kaye was enrolled in the DAYBREAK study. Kaye had been making monthly visits to Intercoastal for one and a half years when that study ended. She immediately decided to be screened to participate in TRAILBLAZER.

Barbara was a caregiver for her husband, Harvey, who was diagnosed with Alzheimer’s at the age of 56. She was his caregiver for 6½ years before he passed away due to complications of Alzheimer’s. They were married for 38 years and have 3 daughters and 7 grandchildren.

Daisy is a caregiver, clinical trial participant and advocate for the LatinosAgainstAlzheimer’s Network. She has been a caregiver for her mother, Sonia, who was diagnosed with early onset Alzheimer’s in 2013 at age 55. In 2014, Daisy tested positive for the gene linked to early onset Alzheimer’s disease. As one of the few Latinas enrolled in an Alzheimer’s clinical trial, Daisy is committed to raising awareness of the importance of Alzheimer’s research and funding.

An award-winning investigative reporter and author, Greg was diagnosed with early onset Alzheimer’s in 2009. He has been writing, chronicling, and talking about the process ever since. Greg’s book, On Pluto: Inside the Mind of Alzheimer’s , has been described as “heartbreaking, defiant, profound” and a new edition was just released this summer. Greg has served on the national Alzheimer’s Association Early Onset Advisory Group, is a patient advocate for the Cure Alzheimer’s Fund of Boston, and is a board member of the distinguished UsAgainstAlzheimers in Washington, D.C.

In 2002, after her mother was diagnosed with Early Onset Alzheimer’s Disease, Karen shifted her focus to raising awareness and fundraising for the Alzheimer’s Association. She has been an active board member of the Chicago Rita Hayworth Gala Committee and co-chaired the 2014 Chicago Gala. In 2015, Karen joined the UsAgainstAlzheimer’s board and is focusing her efforts on advocating for increased focus on Alzheimer’s prevention efforts.

Karen began to question her own chances of developing Alzheimer’s while caring for her mother who was living with the disease. Knowing that she was searching for answers, a friend told Karen about Alzheimer’s clinical research that she was participating in at Progressive Medical Research in Port Orange, FL. Karen immediately reached out to the site and began the screening process to become a volunteer trial participant. She recently organized opportunities for groups of her friends to ask questions of Progressive’s own Dr. Marshall concerning Alzheimer’s disease, dementia, and clinical trial participation. She even convinced twelve of her friends to get the cheek swab test at that event. With the bigger picture in mind, Karen is committed to continuing to push for an Alzheimer’s cure.