Scientists are slowly making progress in the fight against Alzheimer’s disease, but they say that 80 percent of their studies are delayed because too few people sign up to participate.
You can help change that by joining the Alzheimer’s Prevention Registry.
This registry is co-sponsored by the Cleveland Clinic, Columbia University, Johns Hopkins University, the Mayo Clinic, Banner Health (a non-profit healthcare network), and other reputable institutions.
After you sign up, you’ll receive emails about opportunities to participate in studies that you choose and qualify for. The studies need both people with symptoms and people without symptoms.
You are under no obligation to take part in any of the research, and the information you provide remains safe and secure. The Registry will also send you the latest Alzheimer’s news and research findings.
Examples of studies
The Registry website currently lists 34 studies looking for volunteers. A few examples:
Brain Health Registry. Adults aged 18 to 110 can play online brain games every 3 to 6 months to help researchers track their performance with age.
GeneMatch study. After you mail in a cheek swab, researchers will determine (but won’t tell you) if you have the APOE4 gene, which boosts your risk of Alzheimer’s. Open to anyone aged 55 to 75 who has neither mild cognitive impairment nor dementia.
A4 study. The Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study is testing a drug that fights amyloid on people aged 65 to 85. You can enroll only if researchers find that you have signs of amyloid on brain scans and no memory loss.
Story of Ruth Davis
More than a quarter of a million people have already registered. Here’s the story of one volunteer, Ruth Davis, 68, who grew up in a close-knit family in Arkansas.
From childhood to adulthood to motherhood, Ruth and her older sisters Peggy and Mary remained close and inseparable
It wasn’t until they were adults and their father fell ill that the sisters realized that he had become the caretaker of their mother, who was falling victim to dementia. The severity of their mother’s disability became evident to them, and a visit to the doctor confirmed that their mother was in the advanced stage of Alzheimer’s. Just eight months after her diagnosis, she died from the disease at age 69.
Now Ruth is watching helplessly as her beloved sisters, who started showing signs of the disease in their late 50s, slowly slip away, too. It is heartbreaking for Ruth to accept that her two sisters, her best friends and confidants, no longer know who she is and are barely able to communicate.
Ruth says she joined the Alzheimer’s Prevention Registry because of her fear for future generations and she prays that her daughter and grandchildren won’t experience the same fate as her mother and sisters. While science couldn’t save her mother and cannot save her sisters, she is hoping that she will live long enough to see science save others.
For more information
Go to: endALZnow.org or call (800) 438-4380.
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