Scientists Discovering Alzheimer’s Risk in Their Genes Become Advocates for Research and Treatment
WASHINGTON – A growing number of scientists and researchers are learning they carry teh APOE4 gene variant, considerably increasing their risk of developing Alzheimer’s disease. Rather than remaining silent, many are now publicly sharing their stories and advocating for increased research funding and faster drug advancement, hoping to change the trajectory of the disease for themselves and others.
The APOE4 gene is the strongest known genetic risk factor for late-onset Alzheimer’s, and carrying two copies – a condition known as APOE4-4 – dramatically elevates that risk. While a genetic predisposition doesn’t guarantee the development of Alzheimer’s, it highlights a vulnerability that is prompting a new wave of advocacy within the scientific community.
Alzheon, a biotech company, recently released topline results from its Phase 3 trial of oral valiltramiprosate (ALZ-801) targeting individuals with early Alzheimer’s disease who carry two copies of the APOE4 gene. While the large trial did not definitively demonstrate the drug’s ability to slow cognitive decline, Alzheon’s founder and CEO, martin Watson, remains optimistic.He notes that some participants continuing the drug are “holding their own” and blood tests suggest the drug might potentially be “really making a difference in keeping neurons alive.”
This cautious optimism is shared by those directly affected. Wendy Nelson, a 54-year-old PhD scientist in the biotech industry, discovered she carried two copies of the APOE4 variant through a 23andMe genetic test in 2022. “I just sort of didn’t want to tell anybody at first,” she says. “I really just kept the results to myself.” Already committed to a brain-healthy lifestyle – “I’m a triathlete,a hardcore hiker,I eat healthy” – Nelson made lifestyle changes,including ceasing alcohol consumption and starting a cholesterol medication.
Driven by a desire to contribute, Nelson participated in a podcast interview about dementia and brain health, which unexpectedly launched her into the public eye. she has since been interviewed by Reuters, appeared on television news, and partnered with advocacy groups like the APOE4-4 Alzheimer’s Alliance. “It also gives her a forum to advocate for more basic research on Alzheimer’s,” the article states. Just weeks ago, Nelson testified before the Food and Drug Management, urging them to consider “more options” for individuals like herself, stating, “I don’t feel like I have anything out there right now.”
Nelson, along with others in the APOE4-4 community, believes increased research and a streamlined regulatory process for potential treatments are crucial. “People in the APOE4-4 community can change that by pushing for more research and an easier regulatory path for drugs that might help,” the article concludes. Approximately 800,000 people in the U.S. are estimated to carry the APOE4-4 genetic profile.
