"We’re the only family known with this gene," says Chastain descendant.
"If we step up we can help everybody.”
Descendants of Pierre Chastain who in Pickens and Gilmer counties unroll their extensive family tree. Top researcher Dr. Allan Levey at Emory's Alzheimer's Disease Research Center believes studying the Chastain family's genetics could lead to breakthroughs in the field.
It was July 12, 1700 when the ship Mary and Ann of London arrived at the mouth of Virginia’s James River. On board were Pierre Chastain and other French Huguenot refugees who left Gravesend, England for the New World.
Chastain, one of the ship’s 207 passengers, organized the transcontinental journey – but along with those
refugees on the hunt for a new life in a new land, Chastain brought along a genetic makeup that could lead to breakthroughs in Alzheimer’s research.
“The Chastain family bloodline defies anything,” said Dr. Allan Levey, director of Emory’s Alzheimer’s Disease Research Center. “In terms of what we would consider a strong genetic trait, this family way beats the odds. I don’t know another family with such a high prevalence.”
For over a decade Dr. Levey and his research team at Emory have studied descendants of Pierre Chastain because of the astonishingly high rate which they develop the disease. Alzheimer’s affects 50 percent or more of the family, which, after 10 generations, has branched into north Georgia, including Pickens, Alabama and the Carolinas.
Dr. Levey discovered the family during a routine visit from one of the Chastain descendants.
“She had early stages of Alzheimer’s and was looking for an evaluation,” Dr. Levey said. “One of the regular things we do is ask for information about the family and family history. I discovered that her father had Alzheimer’s and he has something like 12 or 13 siblings and they all had Alzheimer’s.”
Since that day, researchers at Emory have recruited 143 members of the family for the study in hopes of isolating a gene that contributes to the Chastains’ affliction.
The family study is especially important, Dr. Levey said, because the Chastains develop the more common late-onset Alzheimer’s - just like 90 percent of all people who develop the disease.
“There are some very, very rare families that have been studied who have members who get Alzheimer’s at a young age,” Dr. Levey said, “and these families have led to the discovery of three genes that cause Alzheimer’s. This was a huge breakthrough. The Chastain family has the strong genetic basis as well, but also has the more typical late-onset and this means they could be even more important in terms of research.
“The discovery of the gene in their family will let us have an understanding of Alzheimer’s and how it occurs in others,” he added. “In those rare families with young onset we inferred from [their genes]. It is important to learn the process of what’s going awry in the brain. Finding this gene could lead to future breakthroughs.”
Pickens resident Dorothy Hightower is a member of the family who has donated her blood for research - and while the deadly disease plagues her family she thinks it could be a blessing that they are in a position to help others.
“This isn’t just about my people,” said Hightower, whose father died from Alzheimer’s, and who has an aunt with dementia and another with the disease assoiated with memory loss. “It’s about everybody’s people. What if they can find a cure? We’re the only family known with this gene. If we step up we can help everybody.”
Hightower is calling out to Chastain descendants to step up and donate their own blood for research.
“The Chastain family is really, really big,” she said as she and her daughter Victoria Rutledge unrolled a massive scroll of paper displaying the Chastain family tree. “I’d say in Pickens there must be at least 100. If you’re a Chastain they want to study you.”
Dr. Levey said anyone with the Chastain name is believed to be of the Pierre Chastain bloodline. All members of the Chastain family are desired for the study, but those over the age of 70 who have not developed Alzheimer’s symptoms are particularly important.
“We need to compare those family members with and without the gene,” he said. “Those older members without memory problems are the ideal candidates, but we definitely encourage everyone to participate.”
Dorothy’s daughter Virginia is a phlebotomist who owns and operates a medical screening company in Ellijay, and members of the Chastain family who are interested in participating in the research can give blood at her office rather than making the drive to Atlanta. She even offers a full blood chemistry panel as incentive for family members to come in.
“For me, our affliction isn’t a bad thing,” she said. “If we act now while the team has funding to do the research we can help find a cure. It’s our responsibility to help and it keeps me hopeful for my kids and other kids. This is an opportunity.”
As part of their ongoing research Dr. Levey and his team have developed a strong connection with the Chastains. They attend family reunions where they draw blood. Just last month, researchers traveled to Ellijay and made a presentation to members of the family about Alzheimer’s and their family’s significance in the field.
“Since the beginning I have met many times with many members of the family and have met with different branches,” Dr. Levey said. “We’ve had branches come to Emory and members of families meet who didn’t know one another. They are terrific people and I’d like to think I’m a part of their family. They see it very clearly; it’s happening in their family and they are motivated to help us discover what caused the disease. The more people we have involved the more likely it’s going to be for us to make those breakthroughs.”
For more information about the Chastain Family Research Project contact CeeCee Manzanares at 404-727-9324.
Affinity Med Screens is located at 572 Maddox Drive, Ste 202B, Ellijay, Ga. 30540. Contact owner Virginia Rutledge at 706-480-4569.