ST LOUIS, Missouri – Marty Reiswig is a husband, a father of two, and a realtor. He believes in making the very best of every day, for good reason.
"At 38, I know I may only have another 12 years of good mental capacity," he explained.
Marty came face-to-face with his family's genetic fate more than a decade ago. At one reunion, there were very few relatives over the age of 60.
He and his wife Jaclyn had just started dating.
"He saw an uncle who was clearly having problems," recalled Jaclyn. "That's when it became clear to him. He took me for a walk and said 'If you want out now, I understand."
"Without skipping a beat," she said. "I'd rather have 30 good years with you, than a lifetime with anybody else."
It is known as the dominantly inherited Alzheimer network trials unit, or DIAN-TU. Researchers are focused on defects in three genes.
"These genetic changes are actually passed in a way that each generation from somebody who has the gene, has a 50-50 chance of getting the gene defect," said Dr. McDade.
People who inherit the defective gene almost always develop Alzheimer's at a young age. Marty's father developed symptoms at age 52.
Early onset Alzheimer`s is an uncommon form of dementia that can strike in people younger than age 65.
- About 5 percent of all the people who have Alzheimer`s disease develop symptoms before age 65
- While around 4 million Americans have Alzheimer`s, at least 200,000 of those people have early onset
- Most people who experience early onset start developing symptoms and show signs of the disease in their fifties or even as early as their forties and thirties
- Experts cannot pinpoint why some people get the disease at a younger age, but others with early onset have the type classified as "familial Alzheimer`s disease" This means they are likely to have a grandparent or parent who also experiences early onset Alzheimer`s.
As part of the study, Marty had genetic testing. For now, he and Jaclyn have opted not to know the results.
"The burden of finding out that I do have the gene would be far worse and heavy and difficult than not knowing," said Marty.
The current trials use drugs that attack different forms of the amyloid protein, associated with Alzheimer's.
"My hope for this study is that it gives us an opportunity to live and enjoy life just five or ten more years," said Marty.
Marty says although he does not know if he carries the genetic defect, he is proactive about what he can do to delay the potential onset. And he's not alone. Both he and his brother are both enrolled in the clinical trials.
NEW STUDY: The Dominantly Inherited Alzheimer Network Trials Unit, or DIAN-TU researchers are focusing on defects in three genes. Most people who inherit these three gene mutations develop Alzheimer`s disease in their forties and fifties. The current trials are using drugs that attack different forms of the amyloid protein, which is associated with Alzheimer`s. This can help researchers understand how to better treat and better diagnose the disease at an earlier stage. All subjects in the trial are individuals who are either known to have this genetic mutation that causes early onset, or who are unaware of their genetic status but have a sibling or parent with the known genetic mutation. The investigators are testing the three experimental drugs, gantenerumab, solanezumab, and JNJ-54861911, to assess the safety, side effects, and impact on imaging and fluid biomarkers. Subtle, early changes in cognition will also be evaluated; those participants at the stage they are recruited are unlikely to have more than minimal changes during the study. The study is being funded by The National Institute of Health, The Alzheimer`s Association, and Eli Lilly and Co., Hoffman-La Roche and Janssen Pharmaceuticals. (Source: https://www.nia.nih.gov/alzheimers/clinical-trials/dominantly-inherited-alzheimer-network-trial-opportunity-prevent-dementia)
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