With the shadow of Alzheimer’s hanging over her family, Debbie is worried about her future.
For Debbie Long, 55, Alzheimer's hit close to home. Her paternal grandmother was diagnosed with Alzheimer's disease. Then the disease struck all three of her sons – Debbie's father, his identical twin and their older brother.
"My father had a hard time watching his mother develop Alzheimer's," said Debbie. "So when it came to his own illness, he didn't want to talk about it. This made things even more difficult for those of us trying to help."
With such an extensive family history, it's hard for Debbie to sit on the sidelines. She decided to take action and joined the Registry with the hope that her family's history can provide clues to scientists about how Alzheimer's strikes.
Join Debbie in bringing us one step closer to ending Alzheimer's.
Meet our 40,000th Registry Member
Teri Leibson, 52, saw her paternal grandmother over time forget the faces around her because of Alzheimer's. And now she worries she may be at increased risk because of her genes. Additionally, she worries about who would care for her if she did develop the disease because Teri doesn't have children. However, she has decided to help in the fight to find a breakthrough for this disease which currently has no treatment or cure. Teri became the 40,000th person to sign up for the Alzheimer's Prevention Registry and is excited for all the opportunities to participate in the crucial research coming down the pipeline.
"As my generation ages, many of us will be affected by some form of dementia if no treatment or cure is found. We need to find an intervention and I want to be part of the solution."
To honor her husband
Vicky Ruppert, 66, lost her husband to younger-onset Alzheimer’s disease three years ago. Jim was only 45 when he began experiencing symptoms of the disease, working as a child psychologist.
After Jim was diagnosed, his father and mother died from the disease, along with most of their siblings. Jim’s therapy skills were put to good use – he hosted a support group for other Alzheimer’s patients and helped raise research money with their local Alzheimer’s Association chapter, putting a face to the disease.
Vicky joined the Alzheimer’s Prevention Registry in honor of her husband, who had 2 copies of the APOE4 gene. She hopes to help advance Alzheimer’s prevention research so that her son will not share the same fate.
Lorie and her mother find normalcy in dance
Lorie Yavorsky, 56, uprooted her life and moved to Ohio after three decades of living in Oregon to become the primary caregiver for her mother who suffers from Alzheimer's. The dynamic represents a role reversal that highlights how once vibrant, lively adults become childlike in the face of the disease.
One of the few fleeting moments they both enjoy is line-dancing on Wednesdays. There, her mother laughs as if she doesn't have a care in the world and even remembers all her dance routines. This is a stark contrast to the rest of the week, where her mother struggles with remembering her children or that she is married.
Because Alzheimer's is a family disease, Lorie has seen the impact firsthand and stepped up to do her part in prevention research because she wants to help researchers find answers. Lorie and the nearly 28,000 enrollees who have joined the Alzheimer's Prevention Registry are helping to bring us a step closer to ending this disease.
A Son's Dedication
Rob Contois, 47, had always shared a close bond with his dad. Rob was devastated when his best friend and the man he looked up to his whole life was diagnosed with Alzheimer’s. Rob left corporate America and never thought twice about becoming his dad’s primary caregiver. Whether it was watching hours of western movies, drawing pictures or taking a trip to the grocery store, Rob relished the simple activities that brought joy to his father who was slowly losing his ability to talk or remember. And he joined the Registry because he knows firsthand how Alzheimer’s can steal a lifetime of memories and wants to participate in research to help stop this disease from impacting other families.
Lonnie worries she could be next after watching family members suffer
Lonnie Barbach, 67, has fond memories of her mother as both a doting homemaker and a successful working professional. But when her mother was diagnosed with Alzheimer's, Lonnie's world was turned upside down. And now she is haunted by the possibility that she, too, could suffer the same fate. In addition to her mother, the disease has also claimed her maternal grandmother, aunt, uncle, and sister.
And because Alzheimer's disproportionately affects women (one in six over the age of 65), she now worries about the ticking time bomb of her genetics and if the disease will also be her fate.
As detection outpaces treatment, the number of people who will suffer with the disease is expected to skyrocket by nearly 50 percent if no breakthrough is found within the next decade.
Lonnie joined the Alzheimer's Prevention Registry to take part in prevention research. Follow Lonnie's lead and do your part to make sure the women in your life don't become another statistic.
A Daughter's Story
Chelsea Cox, 27, lost her father to early-onset Alzheimer's disease when she was just a teen. A fun-loving man dedicated to his family and always ready for action, her father tried to maintain a positive attitude when he was diagnosed at age 54. After her father succumbed to the disease, Chelsea has become a Alzheimer's advocate, helping raise awareness on the disease and doing whatever she can to be part of the breakthrough for this disease which has no treatment or cure. She believes watching a loved one slip away from Alzheimer's disease is tragedy that no one should have to face and joined the Alzheimer's Prevention Registry to help make this a reality.
Lindsay has seen the effects of Alzheimer’s on her family and wants to do her part to find a cure.
Lindsay Ferris Martin, 31, enjoyed spending her childhood summers in Rhode Island with her outgoing grandfather and great-uncle. But as the years passed, she spent much of her adult life watching them slowly descend into Alzheimer's. Once accomplished war heroes, they now struggled with everyday tasks.
"It was painful to watch both their personalities disappear. We'd wait for my grandfather to say something funny and we know he wanted to contribute but couldn't – it was heartbreaking," said Lindsay. "You always think of your parents and grandparents as your protectors. But when Alzheimer's strikes, the tables turn and you have to step up and provide them with care and protection."
Lindsay joined the Registry because she so badly wants to see a breakthrough in Alzheimer's research and help do her part to make sure her father does not suffer the same fate.
Join Lindsay in the fight against Alzheimer's.
Kyla loved her great grandmother dearly and was by her side through a long, painful battle with Alzheimer's disease. Sadly, many other women in Kyla's family also fell victim to the disease. Because of this experience and Kyla's compassion for others, she recognized the need for support, resources and information for other families affected by this terrible disease. Watch as she shares her story and explains why she joined the Alzheimer's Prevention Registry.
Diane has watched her grandmother become a shell of her former self.
Diane Lane, a Banner Health employee based in Phoenix, is experiencing the impact of dementia firsthand with her grandmother who currently suffers with the disease. Diane fondly remembers her grandmother as a woman who was fiercely independent, active and vibrant. She was the glue that held her family together, but now her grandmother is completely dependent on others and living in a care facility.
Red flags went up as Diane's grandmother began to confuse the remote control and telephone. She started thinking the remote control was used to make telephone calls and the telephone was used to change the channel. Looking back, Diane acknowledges her family saw the changes in her grandmother begin to manifest and she's not quite sure why they didn't act on their suspicions sooner.
"The impact of Alzheimer's and how it has affected my grandmother has been an emotional rollercoaster for my family," said Diane. "It's a painful experience to see someone you love and admire become another person you don't even recognize. I don't wish this experience on anyone."
Diane joined the Registry to be part of the groundbreaking research that the Banner Alzheimer's Institute is spearheading.
Join Diane and other Banner Health employees to accelerate Alzheimer's prevention research.