(Photo: Glen Calder speaks about his wife Tammy at an Alzheimer's Association conference. Photo provided.)

It began with a few instances of forgetfulness, of asking people to repeat things she’d already been told.

Then, following a set of instructions became a challenge.

Glen Calder had watched his father struggle with Alzheimer’s disease just a few years earlier. 

Suddenly, he feared his wife, Tammy, might be struggling too.   

“We started seeing some doctors and went through a year of tests before she was diagnosed with early onset Alzheimer’s,” says the Greenville, South Carolina, businessman.

“It was just devastating.”

Alzheimer’s disease is a progressive condition that eventually robs its victims of their memory, language skills, and ability to perform daily activities, according to the U.S. Centers for Disease Control and Prevention. 

Nationally, more than 6 million people had Alzheimer’s in 2023, according to the South Carolina Alzheimer’s Association.

And in the Palmetto State, the number of people 65 and older with the disease is predicted to increase more than 26 percent between 2020 and 2025 from 95,000 to 120,000 people, the association reports.

While information about younger-onset dementia is limited, researchers estimate that about 200,000 Americans are afflicted, according to the Alzheimer’s Association.

And statewide, some 8,303 people younger than 65 were living with some form of dementia in 2019, 4,569 of them with Alzheimer's specifically, although research suggests the actual numbers may be higher, the South Carolina Alzheimer’s Disease Registry reports.

But a new initiative at the Greenwood Genetic Center is offering patients and their families reason for hope with the launch in January of the Carroll A. Campbell Jr. Alzheimer’s Initiative, named for the former South Carolina governor who died of early onset Alzheimer’s in 2005 at the age of 65.

Under the initiative, funded in part by a $2 million allocation from the state, researchers anticipate being able to isolate mitochondria from healthy donors to transplant into affected patients in the hopes of improving treatment options for a crushing disease that has few now.

Mitochondria are naturally occurring substances thought of as the powerhouse of the cells, says Dr. Steve Skinner, director of the center. One of their main functions is producing the energy that cells inside organs use to function on a day-to-day basis, he adds.

Organs like the brain and heart need more mitochondria because they have a high energy demand, he said. And it’s thought that if the mitochondria don’t work as well as they should, they may not be able to prevent the formation of substances like amyloid plaques, which are proteins that in high amounts are linked to Alzheimer’s. 

“The thought process is that if mitochondria are not doing what they’re supposed to do and cells are not working well, and cells die, if you can replace the mitochondria you can at least improve some conditions like Alzheimer’s,” he said, “but also some of these rare pediatric conditions as well.”

Known as Mitochondria Organelle Transplantation, the therapy was developed by MitoSense, a research and development company based in Virginia which is partnering on the initiative along with the Greenwood Genetic Center and the U.S. Department of Veterans Affairs. 

Launched in 1974, the Greenwood Genetic Center works to advance medical genetics and care for families affected by genetic diseases and birth defects. It has satellite offices in Charleston, Columbia, Florence, and Greenville.

Skinner said researchers will start by isolating mitochondria from donors using a self-contained system known as BioSpherix Xvivo to test it in mice, rats and possibly zebra fish to see how it corrects the cells. 

And while some patients have been given mitochondrial transplants with promising results for other conditions previously, he said, it could be up to 10 years before this therapy is ready for widespread use.

“Our goal is if we get five years of solid research, we should have the data we need to move forward. Hopefully faster than that,” he said.

“We are seeing gene therapy products coming to the market much faster now because we don’t have to recreate everything from the start,” he added. “With mitochondrial disorders, it could go much faster. I just don’t want to overpromise.”

First, he said, researchers want to make sure the therapy is safe and that they understand the most optimal way to deliver it, including dose and frequency of administration. Currently, he said, the thinking is it would be given via intravenous infusion.

Eventually, he said, if it proves successful, it’s hoped that South Carolina can be a major supplier of mitochondria, not only for Alzheimer’s, but for other conditions like ALS, traumatic brain injury, and some of the genetic diseases that afflict children, such as Leigh Syndrome, which causes motor, neurological, and intellectual deficits.

“We are not thinking we can regrow brain cells that have been destroyed,” he said. “But … if we can improve the energy supply, we may prevent expansion of the area of injury, and also promote healing, so brain cells can connect with other brain cells and maybe compensate for some of the loss.”

Skinner said the researchers are optimistic. 

“If we didn’t think this had a good chance, we wouldn’t be joining this collaborative. We are anticipating we’ll come out with a treatment that will have a significant impact on Alzheimer’s and other diseases,” he said. “Maybe none of these are the final cure. But if they can extend quality of life and life, it would be great.”

At the unveiling of the new initiative, Gov. Henry McMaster said the project “marks a significant milestone in Alzheimer’s research and positions South Carolina as a leader in advancing this important science.”

And MitoSense Chairman Van Hipp said the new initiative is about “unlocking the potential of groundbreaking research and turning it into actionable solutions" to combat neurodegenerative diseases.

Skinner said McMaster has put another $3 million in the next fiscal year’s budget for the project and that he hopes to attract other sources of funding as well and grow the research collaboration. 

Cindy Alewine, CEO of the South Carolina Alzheimer’s Association, said the initiative and other recent measures mean “there is more hope now than ever.”

“We’re in a more exciting place because we’re in the age of treatment,” she said. “There’s a lot of momentum now worldwide and in South Carolina specifically.”

Alewine said that in addition to funding the GGC project, the General Assembly also recently funded a rural brain health initiative designed to increase access to support and medical care throughout the state as well as a cross-state Alzheimer’s research collaborative between Clemson, the Medical University of South Carolina and the University of South Carolina. 

“All these efforts … will help improve access for South Carolinians to diagnosis, care and treatment,” she said. “I’ve been at (SCAA) for 32 years and have always had hope. But now we’re seeing this hope to come to fruition.”

The Alzheimer’s Association is the largest, private nonprofit funder of Alzheimer’s research, spending $100 million nationwide since 1993, including $3.1 million in South Carolina, Alewine said.

Calder, a member of the association’s board of directors, said he supports any and all research. 

Along with a team that includes his brother, he has raised nearly half a million dollars since 2017 for research, care, and support efforts through the association’s annual Ride To End Alzheimer’s, a grueling three-day, 255-mile bicycle trip from Greenville County to Charleston in the middle of July.

Calder’s introduction to Alzheimer’s began in 2006 when his father was diagnosed with the disease at age 70. He passed away eight years later.

“As a family, we watched his progression through this disease – the various ugly phases of it,” he said. “We watched him become just a shell of a human being.” 

The experience was so traumatic, he said, that it was a year before he could truly grieve the loss.

“Tammy and I saw first-hand exactly what this disease does to somebody,” he said. “Once you watch somebody decline, it’s just horrific.”

After seeing how Alzheimer’s had stolen his father from him little by little, Calder, 61, worried that it might also afflict him eventually given the hereditary nature of the disease.

“I felt like a freight train was coming at me and my brothers,” he said. “I fully expected that (Tammy) would be the one who was taking care of me.”

Then in 2019, he began to notice the changes in her. 

The following year, when she was just 57, they got the diagnosis. It meant she could no longer drive, he said, and with the pandemic raging as well, she had to close the occupational therapy practice she had owned and operated for years. 

Happily married for 34 years, the Calders have two grown sons. And watching helplessly as the disease has beset their beloved Tammy has been heart-breaking for them all. 

For a couple of years after she was diagnosed, Calder said, Tammy was fairly stable. She loved taking daily walks with the family dog and posting the pictures she took along the way of birds, animals and other nature scenes online. 

But, he said, that seems to be slowing down, although she still enjoys spending time in the backyard, where she can observe the deer, the birds, and a visiting fox.      

“It’s just a steady progression of a lack of faculties,” he said wistfully. “It’s gotten to the point where if she has somebody text her, she brings me her phone and asks me to respond.”

Calder said the more involved he is in the Alzheimer’s community, the more aware he becomes that the number of people affected is growing.  

And while the new initiative is unlikely to help his wife, he said it offers some desperately needed hope for the future, even if it’s short of a cure. 

“I feel like any and every ounce of research we do in the entire world is not enough. There is so much more to do,” he said. 

“I hope and pray there is something that is able to derail this.”

ALZHEIMER’S IN THE U.S.

• More than 6 million Americans had Alzheimer’s in 2023
• Some 216,000 unpaid caregivers provided 355 million hours of work valued at more than $5.4 billion in 2022
• More than 95,000 South Carolinians have Alzheimer’s
• There were just 66 geriatricians statewide in 2021

Source: The Alzheimer’s Association; Cindy Alewine, CEO of the SC Alzheimer’s Association. 

For more information about the Greenwood Genetic Center, go to ggc.org.

For more on Alzheimer’s, go to alz.org/sc.

And to support Calder’s Ride to End ALZ, go to act.alz.org.