UVA Health System Blog

Stories about the patients, staff and services of UVA


Vim & Vigor: Robin Roberts, Pancreatic Cancer and Healthy Hearts

On August 13, 2014 | At 9:07 am
UVA pediatric nurse Delores Schrock spends time volunteering abroad. Read about it in Vim & Vigor.

UVA pediatric nurse Delores Schrock spends time volunteering abroad. Read about it in Vim & Vigor.

In 2012, Good Morning America anchorwoman Robin Roberts was diagnosed with myelodysplastic syndrome (MDS), a rare blood disease resulting from chemotherapy treatments for breast cancer. Though bone marrow donors are few, especially for African-American women, Roberts could count on her sister for the life-saving donation.

Roberts’ full story is featured in the Fall 2014 issue of UVA’s family health magazine, Vim & Vigor. Check it out for stories about:

  • Getting tested for pancreatic cancer and new breakthroughs in the field
  • 10 steps to a healthier heart
  • At-home strength training for older adults
  • Adrian Chance, one of the few people to survive two cardiac arrests

Read the online version here.

Live in Virginia? Sign up to receive Vim & Vigor in the mail for free.


Monthly Roundup: July 2014

On August 6, 2014 | At 9:12 am

The past month we featured some remarkable and inspirational patient stories about rare conditions with big impacts:

Kathy and her daughters all have long QT syndrome, a form of abnormal heart rhythm

Kathy Cundiff (center) and daughters Molly Winstead (left) and Emily Phillips

  • Cathy Cundiff protects her health as well as that of her daughters – she is aware of the inherited disorder, Long QT Syndrome, and its abnormal affects on the heart.
  • Devon Hendricks gets treatment for pseudotumor cerebri, relieving headaches and restoring her vision and hearing after six long years.
  • Adrian Chance learns about Brugada Syndrome, a genetic heart defect causing his heart to stop pumping – he also learns his sons do not share the life-threatening trait.
  • Michael G. Douvas, MD, speaks on treating sarcomas, a rare cancer that often shows no symptoms but can affect almost any part of the body.

UVA In the News

Stories that made the news this month:

  • A local tennis player gets to continue his passion for the sport due to a lung transplant, generously donated by an unknown stranger. (The Daily Progress)
  • Community donations gathered at the Ray of Sunshine Festival help a young girl overcome a rare form of cancer. (NBC 29)
  • A brain surgery patient returns to UVA to follow in his doctor’s footsteps and pursue his dream of helping others like him. (The Daily Progress)
  • Joe Thomas begins a program to help cancer patients face their diagnosis and overcome it at the Cancer Center. (Monticello Media)

Pseudotumor Cerebri: A Diagnosis That Helped Devon Hendricks Regain Her Life

On July 30, 2014 | At 9:56 am

Devon Hendricks, 33, enjoys nail polish, playing with her dog, and spending quality time with her boyfriend, Dennis. Throughout her life, she always experienced headaches, but her struggle to find out what caused them began six years ago.

Devon Hendricks, pseudotumor cerebri patient

Devon Hendricks

What started as headaches soon grew into a more serious condition. Hendricks began to experience a “whoosing” sound in her ears as if she were holding up a seashell to them. In addition, she began losing vision and feeling an aching crook in her neck. At their worst, her headaches were so bad that Hendricks missed about two weeks of work and was unable to withstand bright lights.

Hendricks visited doctors in Lynchburg and Roanoke who treated singular symptoms but not her condition as a whole. She saw an ophthalmologist for her swollen optic nerve and a neurologist to look for ways to reduce the pressure in her head. To control her symptoms, Hendricks began self-medicating, modified her diet and quit smoking. She was delighted when her symptoms began improving.

Diagnosing Pseudotumor Cerebri

However, Hendricks’ gratification was short-lived, and her symptoms returned.  She underwent more testing and was eventually diagnosed with pseudotumor cerebri, a high-pressure condition inside the skull. In some cases, this condition occurs when the veins that drain blood from the brain become narrow and cause pressure to build up. Many patients experience symptoms like:

  • Headaches
  • Loss of vision
  • Dizziness
  • Ringing in the ears

Pseudotumor cerebri usually affects women ranging in age from 30s to 50s and is often associated with obesity. To help lessen symptoms and to control blood pressure, doctors often recommend weight loss and a low-sodium.

Learn More
Pseudotumor Cerebri Symptoms & Treatment

In Remission: Relieving Pressure with a Stent

During her struggle, Hendricks went through a CAT scan, an MRI, a spinal tap and an angiogram. Finally, in June 2014, she decided she was done taking pills and done being held captive by her symptoms. It was then that she was referred to Kenneth Liu, MD, in Charlottesville to get the information and care she needed.

Liu performed a novel procedure to implant a stent in Hendricks’ brain to open veins and improve the drainage of blood. The pressures in her brain dropped instantly.

Since the procedure, Hendricks has not experienced headaches or the whoosing sound in her ears. Her vision has returned to normal, and she has noticed a positive shift in her mood. Her only side effect – minor pressure in her head – occurs after she sneezes.

“Pseudotumor cerebri is a disorder that has historically been difficult to treat effectively,” says Liu. “It’s great that we’ve got this new approach that appears to be providing real relief to most patients. At UVA, we have been able to demonstrate that stenting reliably returns intracranial pressures to normal in appropriate patients.”

Liu told Hendricks that she may experience something called stent headaches. She will have to monitor her condition while following up with a neurologist and ophthalmologist. She will also need to have an angiogram performed in December.

“I’m happy to continuously get better,” says Hendricks, who says any discomfort she now experiences is nothing compared to what it used to be.

Her boyfriend also acknowledges that since the surgery, Hendricks has transformed into a happier and healthier person. They both attribute Hendricks’ success to the quality of care she received from Liu and his medical team. Everything was clearly explained from the beginning, and she felt an astounding level of comfort and confidence with the staff, Hendricks says.

Prior to seeking treatment at UVA, Hendricks felt that no one believed that her condition was either real or serious. She says that the hands-on care provided by Liu “was the answer to everything.”

Her advice to others in similar situations:

  • Do your own research on the condition.
  • Be patient in the search to find a trustworthy doctor.
  • Explain all of your symptoms to your doctor, no matter how big or small they may seem

Hendricks believes understanding exactly what she had, knowing the process she would endure ahead of time, and a steady dedication to getting better were essential to her success.

Have you been diagnosed with pseudotumor cerebri or another pituitary tumor? Get more information about the UVA Skull Base Center.

Filed under : Neurosciences,Patient Stories | By
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Brugada Syndrome: A Dangerous Family Trait

On July 17, 2014 | At 10:09 am

This is the second story in a two-part series about genetic heart rhythm disorders. Yesterday, we told you about how genetic testing gave a family answers after a tragedy.

Adrian Chance, 40, has always been the picture of health. He’s a former high school football star and works as a personal trainer in Charlottesville for ACAC Fitness & Wellness Centers. He also stays fit keeping up with three young sons.

Adrian Chance, who has Brugada Syndrome, with his family

Adrian Chance with his family

But on Sept. 16, 2012, in the middle of the night, his heart suddenly stopped pumping. Three weeks later, it happened again. Fortunately, his wife woke up both times and performed life-saving CPR until paramedics arrived to rush Adrian to UVA Medical Center.

Blood tests eventually revealed that Chance inherited a rare heart disorder that can trigger nocturnal sudden cardiac arrest because of a dangerous heart rhythm. He is one of very few people to survive two cardiac arrests.

Diagnosing Brugada Syndrome

His condition is known as Brugada syndrome, which can be passed down from parent to child. Doctors originally thought Chance had long QT syndrome — the most common type of genetic heart defect seen in the U.S. There are several types of LQTS, and one was similar to Chances’ condition, in which a low heart rate during sleep or rest can be the trigger.

With LQTS, there is a lengthening of the time it takes for the heart to fire off a contraction and recover electrically. Chance’s EKGs (electrocardiograms) that record a heart’s electrical activity were normal.

“People with Brugada and LQTS can have a normal EKG, making it really difficult to determine,” says Rohit Malhotra, MD, a UVA cardiac electrophysiologist who specializes in heart rhythm disorders.

Genetic Testing for Heart Disease

Knowing he inherited a life-threatening trait, Chance’s concern immediately turned to the health and safety of his family. At the Cardiovascular Genetics Clinic, Chance and his wife met with Matthew Thomas, a genetic counselor who specializes in inherited heart disease. Thomas explained that each of their three boys had a 50 percent risk of carrying the same genetic disorder.

“Fortunately, all of his boys tested negative,” Thomas says. “It was truly a best-case scenario. This is one of the few times in medicine where you can definitively say someone is not at risk for something.”

Chance doesn’t know any other family members with heart issues. But recent genetic tests have revealed that his father, aunt, brother, sister and two of his sister’s four children share the same genetic disorder. As a precaution, his brother and sister, like Chance, have a defibrillator device implanted next to their hearts. His sister’s two children are being closely followed by a cardiologist. “It makes me feel good that they are getting tested and being proactive about their health,” Chance says.

You and your children should be checked for an inherited cardiac defect if anyone in your family has had unexplained sudden cardiac death (especially at a younger age) or unexplained fainting episodes or seizures.

If you’re concerned about your family’s risk for a heart problem, talk to your doctor about a referral to the UVA Cardiovascular Genetics Clinic.

Filed under : Heart,Patient Stories | By
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Long QT Syndrome: Family Turns Tragedy Into Triumph

On July 16, 2014 | At 8:31 am

Kathy Cundiff loves the waves of the ocean, especially since she was raised on the coast of Virginia. Now that she is a mother of two in Culpeper, she is focused on waves of a different kind — the electrical waves of her heart. Doing so just may have saved her life, and the lives of her two daughters.

Kathy and her daughters all have long QT syndrome, a form of abnormal heart rhythm

Kathy Cundiff (center) and daughters Molly Winstead (left) and Emily Phillips

It all started three years ago. Kathy and her husband were driving on a beautiful summer evening when the couple received a tragic phone call. Kathy’s sister had died mysteriously in her sleep. “She was only 40 and she was very healthy,” she says. “We had no idea what happened and no one could give us any answers.”

There were no clues, until Kathy’s niece almost experienced the same fate. At age 24, she collapsed and her heart stopped beating. Fortunately, she was revived with CPR. Medical tests revealed that Kathy’s niece had a heart problem called long QT syndrome.

Long QT Syndrome and the Heart’s Electrical System

“Long QT syndrome is an inherited disorder with the electrical system of the heart,” explains Rohit Malhotra, MD, a UVA cardiologist with special training in electrophysiology, the electrical patterns of the heart. “It can cause fainting and seizures due to abnormal heart rhythms that lead to a drop in blood pressure,” he says. It can also cause sudden death.

An amazing power station located in the heart generates electrical impulses telling it when to beat. These are the up and down waves seen on an EKG. The letters P, Q, R, S and T are used to label EKG waves, and QT is a specific interval. In long QT syndrome, the QT interval is longer than normal.

Often there are no warning signs that someone has long QT syndrome. Because the disorder is inherited, genetic testing can play an invaluable role in revealing who is at risk for the condition. Kathy, her niece and two daughters all tested positive.

“Our first thought was, what can we still do? Can we ride roller coasters? Can we scuba dive?  What can trigger the problem?” Kathy says.

Malhotra provided reassurance and advice. Long QT syndrome can be managed with medication or an implantable cardioverter-defibrillator if needed. Malhotra says common drugs can cause a longer QT interval, such as certain:

  • Antihistamines
  • Antidepressants
  • Antibiotics

These need to be avoided, as well as caffeine.

“This was the hardest part for me,” Kathy says. “You always saw me with a Redbull before I found out I had this condition. I cut back of some on the volunteering I was doing, but one day I still hope to scuba dive.”

Armed with the knowledge that long QT syndrome can be managed, Kathy doesn’t let fear stop her. She says being under the care of a cardiologist with training in the electrical system of the heart brings her peace of mind.

Trips to the beach will always remind Kathy of her sister, and they also remind her that her family’s hearts are safe.

Do You Have a Heart Condition?

Find out more about our cardiologists and Heart & Vascular Center.

Make sure to check back tomorrow to find out why a personal trainer’s heart suddenly stopped beating.

Filed under : Heart,Patient Stories | By
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Tennis Elbow: To Operate or Not, That is the Question

On July 2, 2014 | At 8:29 am

Angelo Dacus, MD, is upfront with his patient, Lisa Green.

Dr. Dacus works at the UVA Hand Center, as an expert orthopedic surgeon.

Dr. Dacus works at the UVA Hand Center, as an expert orthopedic surgeon.

“Most of the time these can heal with therapy, a splint, rest. “ He nods at her elbow, which she holds, in pain. “But most of the time, people don’t want to take the time.”

Dacus is talking about tennis elbow, or lateral epicondylitis, a condition that affects not just people who play tennis, but anyone who overuses their hand and wrist in repetitively. Having been a rugby player, adventure racer, ultrarunner, and in general a physically active person for most of her life, Green’s elbow damage is not surprising. An MRI shows her ligament is torn and aggravated by a bone spur.

Green is nervous. Before Dacus arrived, she explained that she’s not the kind of person who likes to see doctors. She’s had surgery before, and it wasn’t a great experience – she had a reaction to the anaesthesia; the recovery was painful and long. She’s also afraid that, whatever the solution, she will be without her right arm for a long time. She’s right-handed. She doesn’t like to sit still.

Elbow Surgery vs. Physical Therapy

When Dacus arrived, the two discovered they both hail from Alabama and established a comfortable rapport. Green’s initial anxiety visibly subsides as Dacus addresses her situation.

“I see two main groups of people,” he explains. “Recreational sports and laborers. The sports people don’t want to stop playing, because that’s what they’re energetic about, and for the laborers, it’s a financial consideration—being out of work plus the cost of healthcare. But I’m pretty sure if we put your arm in a splint for six to eight weeks, your elbow will heal on its own. It’s just a question of whether you want to do that or not.”

“What about the bone spur?” Green asks. “Won’t that keep aggravating the joint?”

An MRI of Green's elbow shows the damage to her joint.

An MRI of Green’s elbow shows the damage to her joint.

Bone spurs, Dacus explains, are more common than one might think. He suggests that, “looking at a sampling of patients over 40 would reveal a good 20 percent of them as having some bone spurs.” Dacus explains that wearing a cast to keep her wrist and arm from moving would allow the tissue to reconstruct on its own, bone spur or not. With just medication and physical therapy, it would take months, but could heal.

As Dacus outlines her options – waiting to see if the elbow will heal vs. surgery – Green listens, but shakes her head.

“I had surgery on my other elbow, and I don’t want to wait for this one to get worse like that one did,” she says. Green has already been wearing a wrist brace to help with her elbow and says, “I was immobilized, for weeks, then weeks of physical therapy, it got worse, and then I had to have surgery, more weeks of immobilization and weeks of therapy. So that could happen again, right?”

Dacus nods. “Yes.”

Dacus shows Green where the elbow joint damage needs to be repaired.

Dacus examines Green’s injured tennis elbow.

Green’s other worries: That she drives a stick shift, holds physically demanding jobs, has two school-age children, and there’s yard work and house projects she’s been waiting all winter to get to. Wearing a brace would prevent her from doing all of that—possibly with no recovery at all.

Dacus explains what surgery will entail and the recovery will involve. It’s an outpatient procedure, 45 minutes, followed by 10 days of rest, and six to eight weeks of therapy.

Green nods. “That’s not too bad.”

Dacus describes anesthesia options, and they settle on a nerve block.

The doctor examines her other elbow, and gently shows her where the surgery would occur, what the scar will look like, and he describes the layers of tendon in the elbow. Each layer pulls and moves the hand and wrist in different directions, and during surgery they will have to get to the one that is torn and do any reattaching necessary.  During the procedure, Dacus will also shave away the bone spur.

Elbow Surgery: Scheduled

It’s not a short visit. A nurse checks vitals, another nurse goes over surgery preparation – screens Green for sleep apnea (see sidebar) – and a physician’s assistant (PA) goes over the details of the patient consent form necessary to authorize the operation. Even the scheduler reviews the pre-surgery procedure with Green after scheduling the date and time (which Green set around garden projects and vacation).

Sleep Apnea & Surgery

These days, healthcare providers must screen patients for sleep apnea before surgery. Sometimes, people are sent to do a sleep study to rule the disorder out. The reason? People with sleep apnea have more challenges with anesthesia. Know the symptoms of sleep apnea.

While all of this attention to detail not only helps to establish a roadmap of what to expect, the team’s coordination also calms Green’s nerves about surgery.  She takes a deep breath. “I’m nervous,” she admits. “But it looks like I’ll be back in action by mid-June.”

As she is leaving, Green sees Dacus in the hallway. He confirms the date of surgery and jokes with her a little bit. “He’s a cool guy,” Green says. “I like him. You can’t go wrong with an Alabama boy.”

Is she happy with her decision to have surgery?

“Absolutely. I’m glad to get this done and have the pain fixed.”

Do You Have Joint Pain?

Visit the experts at the UVA Hand Center to discuss your options.

Filed under : Orthopedics,Patient Stories | By
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Poetry Friday: Untitled, by Bonnie Carey

On June 13, 2014 | At 10:15 am

Every week we’re publishing the winning poems from April’s medical poetry contest. This week’s poem was a runner-up in Category II: How Sick Did You Get?

By Bonnie Carey
The worst ailment that on me befell
Was an abdominal cyst that did swell
Of alarming surprise
Was its Guinness Book size
But it’s out, thanks to Leigh Anne Cantrell!

Filed under : Patient Stories,Poetry Friday | By
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Vim & Vigor: Bradley Cooper, Pediatric Epilepsy & Lowering Stress

On June 2, 2014 | At 9:06 am

In 2012’s “Silver Linings Playbook,” Bradley Cooper portrayed the role of a mental health patient diagnosed with bipolar disorder.

Image of Jennifer Raymond, who lost her son to H1N1 flu.

Jennifer Raymond’s son died of H1N1 flu complications in 2009. Read Vim & Vigor to find out how she honors his memory.

Read about Cooper’s experiences and his journey from passive bystander to activist for those 5.7 million adult Americans currently suffering from bipolar disorder.

Cooper’s interview along with a Q&A about the disorder are featured in the Summer 2014 issue of UVA’s family health magazine, Vim & Vigor.  Check it out for stories about:

  • Ongoing therapy to reduce peanut allergies
  • Quick and easy stress-busting techniques
  • Common myths about sunscreen
  • Warning signs of concussions

Read the online version here.

Live in Virginia? Sign up to receive Vim & Vigor in the mail for free.


Poetry Contest Winners!

On May 5, 2014 | At 9:20 am

For National Poetry Month, we held a poetry contest focusing on medical themes. We received numerous submissions, from hilarious haikus to heartfelt free verse. We all found it very difficult to choose our favorites!

Daniel Becker, MD, editor of Hospital Drive, worked with our editorial staff to choose the winners.

All winning poems will be published here on this blog. Look for them in our weekly “Poetry Fridays” post!

Grand Prize Winners

The grand prize winners each will receive a $50 Visa gift card.
image of flowers
Meditation on the Sickle Cell, Laura Kolbe
Kolbe’s poem will also be published in UVA Health System literary journal Hospital Drive.

The Maddening Gladness, Jarish Cohen

Honorable Mention

Doctor, Katherine Crowley

Runners-Up by Category

Category I: Bedside Manners

Untitled, Tina Auth

Category II: How Sick Did You Get?

An Embolic Tale, Jamie DeVore

Untitled, Bonnie Carey

Untitled, Jessica Garber

Category III: Grab (the Black) Bag: Miscellaneous Medical Moments

For John, Lisa A. Ryan

Blink, Callie Bateman

Insomnia, Rabita Alamgir

Congratulations to the winners and thanks to everyone who submitted a poem and to Daniel Becker, MD, for his time and efforts. Don’t forget to subscribe to this blog and to Hospital Drive for more poetry and stories about health, wellness, medicine and survival.

Filed under : Healthy Living,Patient Stories | By
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From Cystic Fibrosis to Marathon Ambitions: How a Lung Transplant Changed a Mom’s Life

On April 14, 2014 | At 8:07 am

Tina Tinsley’s dream was to be a mother, and her wish was granted after years of trying. But because of cystic fibrosis, she couldn’t do basic tasks that most moms take for granted. She couldn’t go to the grocery store or give her children baths. When she left the house, she had to take an oxygen tank along with her.

Tina Tinsley with her husband, Phillip and twins Sara and Cole

Lung transplant recipient Tina Tinsley with her husband, Phillip, and twins Sara and Cole

It wasn’t always this way. Tinsley, now 38, was a physically active child, but cystic fibrosis changed all that as she got older.

A hereditary condition that develops during childhood, cystic fibrosis primarily affects the respiratory system, pancreas and sweat glands. The body produces excess mucus that clogs the bronchi, which are the main passageway into the lungs. This leads to breathing difficulties and infections.

Infertility and IVF

Cystic fibrosis also causes infertility. Tinsley, who lives in Staunton, Va., was told she’d never have children, but she wasn’t one to take no for an answer. She and her husband, Phillip, kept trying. After numerous procedures and two in vitro fertilization (IVF) attempts over eight years, they were successful, and twins Cole and Sara were born in 2009.

Her faith in God kept her going through the long and often-disappointing process, she says. The twins were in the NICU for many weeks after their birth. “UVA took excellent care of them and made sure they were coming home,” she says.

After the birth of the babies, her cystic fibrosis symptoms worsened. “My husband says it really took a toll on my body,” she says. “But even if I knew that, if I had been warned, I don’t know if I would’ve listened. I really wanted to have kids.”

Family History of Cystic Fibrosis

Things took a turn for the worse in October 2013, when Tinsley was admitted to UVA with a lung infection and put on a ventilator and feeding tube. “I nearly left here. I almost died,” she says. For Tinsley, that was a very real possibility. Her brother died of cystic fibrosis three years ago at the age of 39. She also has two cousins with the condition, one of whom died from it.

Antibiotics controlled her infection, and eventually she was strong enough to be put on the lung transplant waiting list. Still, she wasn’t ready to admit she needed a transplant. She thought she might still get better and needed the convincing of her doctor, Max Weder, MD. “He said I wasn’t going to live if I didn’t have the transplant,” Tinsley says. “He’s by far the best physician I’ve ever had. We make a good team. The whole transplant team is just phenomenal.”

Tinsley also got support from other members of the transplant team at UVA, including social worker Bill Potts and pre-transplant coordinator Heidi Flanagan, RN.

“Heidi knew how nervous I was, and she was so compassionate. She told me to look ahead a year to what my life was going to be like.”

Potts, she says, asked her what she wanted from the rest of her life. “I told him I just wanted to be a mama to my babies. He said, ‘Transplant can give you that.’”

Lung Transplant and Recovery

While Tinsley was in the hospital, Phillip, Tinsley’s husband of 18 years, would drive 40 miles from Staunton to Charlottesville to be with her and then drive home to be with their children.

Christine Lau, MD, performed Tinsley’s lung transplant, which lasted almost 10 hours. Tinsley was removed from the ventilator the first day after her surgery. “I was up sitting in a chair the next day and walking in the hallways the day after that.”

She stayed in the MICU (medical intensive care unit) for two weeks following the surgery and worked with a respiratory therapist, physical therapist and nutritionist to regain normal function. Tinsley also takes immunosuppressants, drugs that prevent her body from rejecting her new lungs. Transplant recipients take anti-rejection medications for the rest of their lives.

Weder says Tinsley’s case is a special one. It’s not often that patients go from being near death to walking out of the hospital several weeks later. “She is a unique case and serves as a great example of how everyone on our MICU and transplant teams work together in difficult transplant cases.”

Along the way, the Tinsley family received lots of help. People in their Staunton community raised funds to help cover some of their transplant medical expenses. Another group made sure the children had presents under the tree this past Christmas when neither parent had the time or resources to go shopping. The Tinsleys’ church community donated weeks of meals during her hospitalization. The Tinsleys also received a grant from a nonprofit that paid for one round of their IVF procedure.

Tinsley, whose motto is “Live to fight another day,” says she feels better now than she’s felt since she was a child. She can give her children those baths, she goes to the grocery store and the oxygen tank is gone. She hopes to share her story with local churches and maybe write a book someday. Her new goals also include running a marathon. “I know I can do it,” she says.

More Transplant Information

Find out more about UVA’s lung and other transplant programs.

Meet Dr. Weder

Learn more about his interests and research.