Jack watched what Alzheimer’s disease did to his mother and he is determined to make sure it doesn’t happen to future generations. He convinced all 5 of his siblings to participate in Washington University’s Memory and Aging Project, which observes adult children who are presently unaffected by the disease. He travels 72 miles round trip 25 times a year (about twice a month) for his visits and doesn’t mind it one bit, as long as he helps increase awareness and helps find a cure for AD.

Having someone as positive and Joyful as Alice has helped BWH CART program immensely. She is a devoted research participant who gives research a good rap to those who are hesitant about getting involved, even speaking at several outreach events. Not only is she a participant, but she is a dedicated advocate for loved ones who are living with Alzheimer’s. Alice sees her research involvement as a positive addition to her life and sees everything as a lesson to be learned. She is passionate about her research community and is determined to be a part of a cure for AD.

Peter is a study partner for a previously featured Citizen Scientist, Patty Barbato. Patty is 1 of 10 siblings, half who carry the genetic mutation for early onset Alzheimer’s disease. Their family decided to action against the disease and start an annual bike road known as “The Ride to End Alzheimer’s”. They have testified in front of congress, appeared on TV, allowed scientists to bank their DNA for research, and have worked tirelessly to educate people about early onset AD and clinical trial enrollment. Peter is entirely supportive of Patty and her family, and they have all dedicated their lives to increase awareness, money and quicken research.

Wayne and his wife travel 200 miles round trip to Roper St. Francis 12 times a year for his study, and they arrive with smiles on their faces and baked goods in their hands! They’ve been doing this for 4 years, that’s 192-240 hours of travel! For them, it’s part of their duty to mankind to leave it better than they found it. Wayne and his wife are committed to furthering research and increasing awareness. Several of their friends have been evaluated by Roper St Francis since their arrival at the clinic. The team considers them part of their family now and is grateful for their involvement.

Sharon has been a committed research participant at Roper St. Francis for over 10 years! The team there describes her as a member of their family. She offers constant support and insight into her experiences with Alzheimer’s research. She stays on top of community and current events involving research, shares information with others, and informs the team of different organizations that can help further their mission. She calls her reason for involvement selfish but helping further research for future generations is anything but!

Participating in research is a part of who Phil Cunningham is. He was raised in a progressive household and when his parents passed, both of their bodies had been donated to medical schools. As a veteran, he knew it was part of his civic duty to get involved.

Since then, Phil is one of CART’s first Research Ambassadors, and is entirely committed to doing whatever he can to spread the message about the importance of getting involved in memory research. He has spoken at several Massachusetts Councils on Aging (MCOA) gatherings, visits a retirement community every Thursday to be a resource for memory concerns, and is a member of an online community of A4 study type participants. Phil is a respected member of his trial community and is dedicated to do whatever he can to hasten a cure for Alzheimer’s.

Bobby’s wife Carol was in an accident in her late 50s and didn’t know where she was. Realizing her mother had been diagnosed with dementia in her 80s, they reached out to a local center in their hometown of Springfield, Massachusetts. Wanting something more, Bobby and Carol traveled 200 miles round trip to Brigham and Women’s CART to get involved in research.

As Carol’s study partner, Bobby has taken an active role in not only her care, but in his community. He speaks at outreach events, his church, and to anyone who will listen. His faith and his family are his biggest motivator, saying participating in research has validated their religious beliefs.

Cheryle was interviewed from her chair at Toronto Memory Program’s research center by CTV Network’s Pauline Chan and resonated with hearts across Canada. She spoke candidly about her experience with Alzheimer’s clinical trials, about her own memory loss and how she is helping others by helping herself. Cheryle has helped reduce the stigma surrounding Alzheimer’s disease and the fear of clinical trials. She has encouraged others to seek out opportunities and to not ignore their memory symptoms. The team at Toronto Memory describes her as an exemplary patient and advocate with an honest viewpoint filled with hope and a call to action.  

Robert and Gwenyth are a husband and wife team dedicated to lessening the impact of Alzheimer’s disease on future generations. They travel 161 miles (260km) round trip to make their trial appointments, and they say it’s well worth it. They have shared her personal experience with Alzheimer’s disease and clinical trials on the local and national level, including the Toronto Memory Program by CTV Your Morning show. Robert and Gwenyth will talk about Alzheimer’s clinical trials to anyone that will listen. They reassure audiences that participating in a trial is a valuable, uplifting and supportive experience. They are fully committed to lessening the impact of Alzheimer’s on future generations.  

Barbara got involved in Alzheimer’s clinical trials and research after helping care for a friend’s parent with Lewy Body Dementia. She is a pillar in her local dementia community, doing whatever she can to reach out and support those who need it. She is eager and enthusiastic to participate in any trial she can. She is currently on her third! Barbara’s motivations are like many other trial patients. Not only does she want to help others in the future, but she wants to make sure members of her family benefit from her participation long after she’s gone. 

Ida believes that contributing to society is a necessity of every person, and she applies that to Alzheimer’s clinical trials as well. She has a history of the disease in her family and, after taking care of her mother, she knew she had to do something about it. Ida is passionate about her clinical trial participation, encouraging others to do so as well. She knows that although research has come far, the more people who participate in trials, the quicker that will be. She has participated in two studies already and has no plans on stopping anytime soon.  

Patty has not let her Alzheimer’s diagnosis stop her or her family from doing whatever the can to make Alzheimer’s research a priority. Before even knowing she had the disease she enrolled in an Alzheimer’s clinical trial after caring for her mother who died from the disease, whose twin sister also had it. Of her 10 siblings, 5 were found to carry the genetic mutation for early onset Alzheimer’s. Patty has only used this as fuel for her fire. She has testified in front of Congress, appeared on TV, and started an annual bike ride fundraiser, “The Ride to End Alzheimer’s”. She has dedicated her life to awareness and finding a cure, and has even allowed scientists to bank her DNA in the interest of research.  

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.