Edit ModuleEdit ModuleShow Tags
Edit ModuleShow Tags

Pittsburgh at the Forefront of The Brain Revolution

Alzheimer’s disease is the most expensive ailment to treat and the sixth-leading cause of death in the United States. Pittsburgh has become a battleground in the fight against the devastating illness, thanks to the decade-long quest of two Pittsburgh researchers whose work is on track to change the face of medicine and affect millions worldwide.



(page 2 of 3)


The late Gail DeMoe of Tioga, N.D.,  (top) and her six children (clockwise from top left), the late Brian DeMoe, the late Doug DeMoe, Karla DeMoe Hornstein, Dean DeMoe, the late Lori DeMoe McIntyre and Jamie DeMoe, in 2005. All of the children but Karla inherited the genetic mutation for early onset  Alzheimer’s. The family’s ongoing collaboration with Pitt researchers may hold the key to a cure for the disease.
 

Theory into practice

When thinking about significant medical breakthroughs, it’s important to remember that doctors form only half of the equation. The other half is made up of people who, whether by choice or by chance, often remain anonymous to history. They are the patients who are essentially the human testing ground for the science. On Valentine’s Day 1984, exactly 18 years before Klunk and Mathis’ PiB trial in Sweden, Thomas Starzl pioneered the world’s first heart and liver transplant thanks to a 6-year-old Texas girl named Stormie Jones, who inherited a rare disorder that caused her cholesterol levels to skyrocket. Thirty years earlier, on Feb. 23, 1954, Jonas Salk tested his polio vaccine on children at Pittsburgh’s Arsenal Elementary School.

With proof in hand that the discovery of PiB could track Alzheimer’s disease, Klunk now set his sights on putting it to practical use in other patients, where he could watch Alzheimer’s progression in real time, not just at autopsy. The field had been theorizing that the best time to target the disease was as early as possible — maybe even before people started showing symptoms. Now they were able to view how a buildup of amyloid proteins in the brain corresponded with a person’s cognitive abilities.

To examine the disease’s progression, Klunk sought a tiny sliver of the Alzheimer’s population: people born with a genetic mutation that guarantees early onset of the disease, typically when a carrier is in his or her 40s. Known as autosomal dominant Alzheimer’s, it affects only about 1 percent of the overall number of people who have the disease. Those who carry it have a 50 percent chance of passing it on to their children.

In 2004, just two years after the first patient was injected with PiB, a family of oil workers from North Dakota were undergoing a battery of tests designed to diagnose what was causing them to struggle with jobs they had done for virtually their entire adult lives.

Unlike the general population, people with genetic mutations for Alzheimer’s could get a definitive diagnosis through a blood test. Such was the case for the DeMoe family of Tioga, N.D., and the news went from bad to worse: five of the six siblings had the mutation. As did Stormie Jones, they had inherited a disastrous medical anomaly that could unlock solutions for the rest of the world. Determined to find some meaning in their fate, they sought research that might lead them to an experimental treatment.

In Bill Klunk, they found a champion. The DeMoes — and eventually many of their cousins and children — began making annual pilgrimages to Pittsburgh, where they would undergo days of testing designed to compare their cognitive levels with the amyloid load that PiB illuminated in their brains. Klunk learned about each of them in painstaking detail, quite literally inside and out. He celebrated their triumphs and walked with their ghosts. He helped them adjust to nursing homes. He advised their spouses on handling their combative outbursts.

In late 2012, when the scientific community finally was ready to begin clinical trials of drugs that fight amyloid buildup, he shepherded them into the Dominantly Inherited Alzheimer’s Network, which tests experimental Alzheimer’s drugs in people with mutations to determine whether they can stop the disease. One of the test sites is at Pitt.
Years earlier, in his book “The Puzzle People,” Starzl reflected on his interaction with transplant patients, many of whom introduced themselves after some time had passed by saying, “I know you won’t remember me, but …” He recalled how Stormie Jones’ shoelaces were always loose and how unforgettable her smile was.

“They were wrong about one thing. That I would not remember,” Starzl wrote.

In that same vein, Klunk will not forget the DeMoes; they have forever changed him, their lives giving purpose to his work just as his work gave purpose to their lives.

From the original six DeMoe siblings who came through the Pitt Alzheimer’s center, two since have died, and one is in a North Dakota nursing home, unable to participate any longer. But their children, cousins, nieces and nephews all have entered the research, carrying on their family’s legacy. Along the way, Klunk has helped them transition into nursing homes, comforted those left behind when someone dies, and counseled the younger generation as they contemplate whether they want to know their own genetic status.
“These people have kids the age your kids are, and you know all too well the impact of the disease in the elderly, and you try to extrapolate what it means for these people,” he says. “I feel like I’m a part of the family in a way because they make you feel that way.”
 

Edit ModuleShow Tags
Edit Module

Edit Module Edit ModuleShow TagsEdit ModuleShow Tags
Edit Module Edit ModuleShow Tags

The Latest

Pittsburgh Rings, Sings and Dances into the New Year

“Highmark’s First Night Pittsburgh” features 100 performances for kids of all ages and, of course, fireworks for everyone.

The 400-Word Review: At Eternity's Gate

It's a fair Vincent Van Gogh biopic, but fails to make a strong impression.

When I Realized the True Meaning of the Army-Navy Game

As Army veteran and Pittsburgh Steeler Alejandro Villanueva sees it, Army-Navy is football at its core in a setting that transcends the sport.​

Apteka and Whitfield Team Up for a Vegan Christmas Meal

The latest installment of Bethany Zozula's Sharing Knives dinner series brings Apteak co-owners Kate Lasky and Tomasz Skowronski in for an Eastern European feast.

At Jergel's, It's Beers and Grub Near Some Rock and Roll

The Warrendale venue makes seeing a show feel like an easygoing night out.

The Mon Wharf Switchback Paves a Route to the River

The new ramp to the Monongahela River provides a way for bikers and walkers to access the riverfront.

Overseas Adventures Lead to Pittsburgh Weddings

These couples made the trip that would take them from dating to engaged.

Hungry for Something Good, Pittsburgh? Where We're Eating in December.

We're celebrating a decade of Dinette, tempted by hot pitas at Pitaland and digging the (not so) secret sauce at Salem's Market & Grill.

I Made It! Market Can Simplify Your Holiday Shopping

More than 90 local handicraft artists will come together for a one-day event to save you from a panic-induced Christmas Eve shopping trip.

Have a Stout or an IPA, with a Shot of Space

Pittsburgh’s astronomers head to the taps to discuss everything from planetary movement to asteroids to — yes — the possibility of alien life, much to the delight of conspiracy theorists and space fanatics alike.

Festival of Lights Illuminates Holiday Cheer

La Roche hosts a night of drinking cocoa, taking carriage rides and getting into the holiday spirit.

Allegheny County Could Pay You to Convert Your Wood Burning Fireplace

In the hopes of reducing air pollution and improving indoor air quality — particularly for those with asthma — the county health department is conducting a program to convert open-hearth fireplaces into vented gas-burning appliances.

The 400-Word Review: The Possession of Hannah Grace

It's tough to take a setting this creepy and waste it, but this limp possession flick manages to do just that.

Relive Steelers' Super Bowl Wins at New Heinz History Exhibit

The Western Pennsylvania Sports Museum’s new exhibit features game-worn, signed jerseys and other artifacts from Steelers legends.

Five Essential December Events in Pittsburgh

A creepy Christmas, Cleveland comics and more December happenings.
Edit Module
Edit ModuleShow Tags


Pittsburgh Rings, Sings and Dances into the New Year

Pittsburgh Rings, Sings and Dances into the New Year

“Highmark’s First Night Pittsburgh” features 100 performances for kids of all ages and, of course, fireworks for everyone.

Comments

The Mon Wharf Switchback Paves a Route to the River

The Mon Wharf Switchback Paves a Route to the River

The new ramp to the Monongahela River provides a way for bikers and walkers to access the riverfront.

Comments


All the foodie news that's fit to blog
Apteka and Whitfield Team Up for a Vegan Christmas Meal

Apteka and Whitfield Team Up for a Vegan Christmas Meal

The latest installment of Bethany Zozula's Sharing Knives dinner series brings Apteak co-owners Kate Lasky and Tomasz Skowronski in for an Eastern European feast.

Comments

Celebrate the Holidays with an Allegheny River Bar Crawl

Celebrate the Holidays with an Allegheny River Bar Crawl

Expecting visitors this holiday season? We have you covered with a crawl that includes karaoke, wine, beer and history.

Comments


Not just good stuff. Great stuff.
Fitness: Five Great Trails to Run in the Fall in Pittsburgh

Fitness: Five Great Trails to Run in the Fall in Pittsburgh

Don’t resign yourself to the gym treadmills just yet – fall is one of the best times of the year to get outside and pound the pavement, surrounded by falling leaves and the possibility of grabbing a hot latte on the way home.

Comments

Love Sourdough? Find the Best There Is at These Five Bake Shops

Love Sourdough? Find the Best There Is at These Five Bake Shops

We dove into the local artisan bread scene to find the best places that bake naturally leavened bread in Pittsburgh.

Comments


At Jergel's, It's Beers and Grub Near Some Rock and Roll

At Jergel's, It's Beers and Grub Near Some Rock and Roll

The Warrendale venue makes seeing a show feel like an easygoing night out.

Comments

Five Essential December Events in Pittsburgh

Five Essential December Events in Pittsburgh

A creepy Christmas, Cleveland comics and more December happenings.

Comments


Mike Prisuta's Sports Section

A weekly look at the games people are playing and the people who are playing them.
When I Realized the True Meaning of the Army-Navy Game

When I Realized the True Meaning of the Army-Navy Game

As Army veteran and Pittsburgh Steeler Alejandro Villanueva sees it, Army-Navy is football at its core in a setting that transcends the sport.​

Comments

Trust in Roethlisberger Remains Steelers’ Best Option

Trust in Roethlisberger Remains Steelers’ Best Option

We’re about to find out if that late-game meltdown in Denver last week was an aberration or a revelation.

Comments


The movies that are playing in Pittsburgh –– and, more importantly, whether or not they're worth your time.
The 400-Word Review: At Eternity's Gate

The 400-Word Review: At Eternity's Gate

It's a fair Vincent Van Gogh biopic, but fails to make a strong impression.

Comments

The 400-Word Review: The Possession of Hannah Grace

The 400-Word Review: The Possession of Hannah Grace

It's tough to take a setting this creepy and waste it, but this limp possession flick manages to do just that.

Comments


Everything you need to know about getting married in Pittsburgh today.
Overseas Adventures Lead to Pittsburgh Weddings

Overseas Adventures Lead to Pittsburgh Weddings

These couples made the trip that would take them from dating to engaged.

Comments

On Theme Weddings with Style

On Theme Weddings with Style

These brides went beyond a color scheme for their wedding day to work in an entire theme.

Comments


Weekly inspiration for your home from the editors of Pittsburgh Magazine
Allegheny County Could Pay You to Convert Your Wood Burning Fireplace

Allegheny County Could Pay You to Convert Your Wood Burning Fireplace

In the hopes of reducing air pollution and improving indoor air quality — particularly for those with asthma — the county health department is conducting a program to convert open-hearth fireplaces into vented gas-burning appliances.

Comments

Five Home Tours to Get You Into the Holiday Spirit

Five Home Tours to Get You Into the Holiday Spirit

From the Old Allegheny Victorian Christmas House Tour on the North Side to the Holiday Musical Tea & Tour at Hartwood Acres, get some merry inspiration at these elaborately decorated events.

Comments