When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Savannah Salazar (left) and her mother, Tracy Dixon-Salazaar, who earned a PhD in neurobiology in the quest for a treatment of her daughter's seizure disorder.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
In China, Prisoners of Conscience Are Being Murdered for Their Organs to Fuel Transplant Tourism
A somber photo of the Great Wall of China.
Organ transplantation can dramatically improve or save lives. A heart transplant can literally give a person a new lease of life, while a kidney transplant frees the recipient from lengthy spells on dialysis.
A people's tribunal in London has recently found that in China, organs are sourced from prisoners of conscience who are killed on demand to fuel the lucrative organ transplantation market.
To protect the integrity of organ transplantation, there are strict ethical guidelines. When organs are sourced from deceased persons, the donation must be voluntary, donors must die naturally before any organs are taken, and death must not be hastened to provide organs. These ethical guidelines protect donors and provide assurance to transplant recipients that their organs have been sourced ethically.
However, not all countries follow these ethical guidelines. A people's tribunal in London has recently found that in China, organs are sourced from prisoners of conscience who are killed on demand to fuel the lucrative organ transplantation market. This conclusion, reported at the United Nations Human Rights Council on September 24, was not reached lightly.
The independent China Tribunal, made up of four human rights lawyers, one surgeon with transplant experience, an academic who specialises in China studies and a businessman with human rights interests, spent over a year looking at written materials and heard evidence from over 50 witnesses in five days of hearings. Their grim conclusion, that prisoners of conscience are murdered for their organs, confirms the findings of earlier investigations.
Questions first arose over China's transplant system when the numbers of transplants rose dramatically after 2000. Transplant capacity rapidly increased; new infrastructure was built and staff were trained. Hospital websites offered livers, hearts and kidneys available in a matter of days or weeks, for a price. Foreigners were encouraged to come to China to avoid lengthy transplant waiting lists in their home countries.
At the time, it was a mystery as to how China had a ready supply of organs, despite having no volunteer donation system. Eventually, in 2006, the Chinese government stated that organs were removed from prisoners who had been found guilty and sentenced to the death penalty. But this explanation did not ring true. Death row prisoners often have poor health, including high rates of infectious diseases, making them poor candidates for donation. By contrast, the organs offered for sale were promised to be healthy.
In 2006, the first clues about the source of the organs emerged. A woman called Annie reported that her surgeon husband had been present during organ removal from Falun Gong practitioners who were still breathing as the scalpels cut into them. A subsequent investigation by two Canadian human rights lawyers examined multiple sources of evidence, concluding that murdered Falun Gong practitioners were indeed the source of the organs.
The evidence included testimony from practitioners who had been imprisoned, tortured, and later released. During imprisonment, many practitioners reported blood and other medical tests examining the health of their organs—tests that were not performed on any other prisoners. Phone calls made to Chinese hospitals by investigators posing as patients were offered rapid access to fresh organs from Falun Gong practitioners. The organs were guaranteed to be healthy, as the practice forbids smoking tobacco and drinking alcohol.
Since 2006, evidence has continued to accumulate. China has a huge transplant industry and no plausible source of voluntary organ donations. Unlike the rest of the world, Chinese waiting times remain very short. Foreigners continue to come to China to avoid lengthy waiting lists. Prisoners of conscience, including Tibetans and Uyghurs as well as Falun Gong practitioners, are still being imprisoned and medically tested.
The Chinese government continues to deny these crimes, claiming that there is a volunteer donor system in place.
The China Tribunal heard from Uyghur witnesses who had recently been inside the notorious labour camps (also called "re-education" centers) in Xin Xiang. The witnesses reported terrible conditions, including overcrowding and torture, and were forced to have medical examinations. They saw other prisoners disappear without explanation following similar medical tests. As recently as 2018, doctors in Chinese hospitals were promising potential patients healthy Falun Gong organs in taped phone calls.
The Chinese government continues to deny these crimes, claiming that there is a volunteer donor system in place. In the Chinese system, prisoners are counted as volunteers.
China's forced organ harvesting from prisoners of conscience has international implications. A recent study found that most published Chinese transplant research is based on organs sourced from prisoners. International ethical guidance prohibits taking organs from prisoners and prohibits publication of research based on transplanted material from prisoners. The authors of that study called for retractions of the papers, some of which are in well-known scientific journals. So far Transplantation and PLOS One are among the journals that have already retracted over twenty articles in response. On questioning from the editors, the authors of the papers failed to respond or could not verify that the organs in the transplant research came from volunteers.
The international community has a moral obligation to act together to stop forced organ harvesting in China.
The China Tribunal concluded that forced organ harvesting remains China's main source of transplant organs. In their view, the commission of Crimes Against Humanity against the Uyghurs and Falun Gong has been proved beyond reasonable doubt. By their actions, the Chinese government has turned a life-saving altruistic practice into our worst nightmare. The international community has a moral obligation to act together to stop forced organ harvesting in China, and end these crimes against humanity.
Taylor Schreiber, now 39, runs an immunotherapy company testing drugs that may be less toxic alternative to chemotherapy.
It looked like only good things were ahead of Taylor Schreiber in 2010.
Schreiber had just finished his PhD in cancer biology and was preparing to return to medical school to complete his degree. He also had been married a year, and, like any young newlyweds up for adventure, he and his wife Nicki decided to go backpacking in the Costa Rican rainforest.
He was 31, and it was April Fool's Day—but no joke.
During the trip, he experienced a series of night sweats and didn't think too much about it. Schreiber hadn't been feeling right for a few weeks and assumed he had a respiratory infection. Besides, they were sleeping outdoors in a hot, tropical jungle.
But the night sweats continued even after he got home, leaving his mattress so soaked in the morning it was if a bucket of water had been dumped on him overnight. On instinct, he called one of his thesis advisors at the Sylvester Comprehensive Cancer Center in Florida and described his symptoms.
Dr. Joseph Rosenblatt didn't hesitate. "It sounds like Hodgkins. Come see me tomorrow," he said.
The next day, Schreiber was diagnosed with Stage 3b Hodgkin Lymphoma, which meant the disease was advanced. He was 31, and it was April Fool's Day—but no joke.
"I was scared to death," he recalls. "[Thank] goodness it's one of those cancers that is highly treatable. But being 31 years old and all of a sudden being told that you have a 30 percent of mortality within the next two years wasn't anything that I was relieved about."
For Schreiber, the diagnosis was a personal and professional game-changer. He couldn't work in the hospital as a medical student while undergoing chemotherapy, so he wound up remaining in his post-doctorate lab for another two years. The experience also solidified his decision to apply his scientific and medical knowledge to drug development.
Today, now 39, Schreiber is co-founder, director and chief scientific officer of Shattuck Labs, an immuno-oncology startup, and the developer of several important research breakthroughs in the field of immunotherapy.
After his diagnosis, he continued working full-time as a postdoc, while undergoing an aggressive chemotherapy regimen.
"These days, I look back on [my cancer] and think it was one of the luckiest things that ever happened to me," he says. "In medical school, you learn what it is to treat people and learn about the disease. But there is nothing like being a patient to teach you another side of medicine."
Medicine first called to Schreiber when his maternal grandfather was dying from lung cancer complications. Schreiber's uncle, a radiologist at the medical center where his grandfather was being treated, took him on a tour of his department and showed him images of the insides of his body on an ultrasound machine.
Schreiber was mesmerized. His mother was a teacher and his dad sold windows, so medicine was not something to which he had been routinely exposed.
"This weird device was like looking through jelly, and I thought that was the coolest thing ever," he says.
The experience led him to his first real job at the Catholic Medical Center in Manchester, NH, then to a semester-long internship program during his senior year in high school in Concord Hospital's radiology department.
"This was a great experience, but it also made clear that there was not any meaningful way to learn or contribute to medicine before you obtained a medical degree," says Schreiber, who enrolled in Bucknell College to study biology.
Bench science appealed to him, and he volunteered in Dr. Jing Zhou's nephrology department lab at the Harvard Institutes of Medicine. Under the mentorship of one of her post-docs, Lei Guo, he learned a range of critical techniques in molecular biology, leading to their discovery of a new gene related to human polycystic kidney disease and his first published paper.
Before his cancer diagnosis, Schreiber also volunteered in the lab of Dr. Robert "Doc" Sackstein, a world-renowned bone marrow transplant physician and biomedical researcher, and his interests began to shift towards immunology.
"He was just one of those dynamic people who has a real knack for teaching, first of all, and for inspiring people to want to learn more and ask hard questions and understand experimental medicine," Schreiber says.
It was there that he learned the scientific method and the importance of incorporating the right controls in experiments—a simple idea, but difficult to perform well. He also made what Sackstein calls "a startling discovery" about chemokines, which are signaling proteins that can activate an immune response.
As immune cells travel around our bodies looking for potential sources of infection or disease, they latch onto blood vessel walls and "sniff around" for specific chemical cues that indicate a source of infection. Schreiber and his colleagues designed a system that mimics the blood vessel wall, allowing them to define which chemical cues efficiently drive immune cell migration from the blood into tissues.
Schreiber received the best overall research award in 2008 from the National Student Research Foundation. But even as Schreiber's expertise about immunology grew, his own immune system was about to fight its hardest battle.
After his diagnosis, he continued working full-time as a postdoc in the lab of Eckhard Podack, then chair of the microbiology and immunology department at the University of Miami's Leonard M. Miller School of Medicine.
At the same time, Schreiber began an aggressive intravenous chemotherapy regimen of adriamycin, bleomycin, vincristine and dacarbazine, every two weeks, for 6 months. His wife Nicki, an obgyn, transferred her residency from Emory University in Atlanta to Miami so they could be together.
"It was a weird period. I mean, it made me feel good to keep doing things and not just lay idle," he said. "But by the second cycle of chemo, I was immunosuppressed and losing my hair and wore a face mask walking around the lab, which I was certainly self-conscious. But everyone around me didn't make me feel like an alien so I just went about my business."
The experience reinforced his desire to stay in immunology, especially after having taken the most toxic chemotherapies.
He stayed home the day after chemo when he felt his worst, then rested his body and timed exercise to give the drugs the best shot of targeting sick cells (a strategy, he says, that "could have been voodoo"). He also drank "an incredible" amount of fluids to help flush the toxins out of his system.
Side effects of the chemo, besides hair loss, included intense nausea, diarrhea, a loss of appetite, some severe lung toxicities that eventually resolved, and incredible fatigue.
"I've always been a runner, and I would even try to run while I was doing chemo," he said. "After I finished treatment, I would go literally 150 yards and just have to stop, and it took a lot of effort to work through it."
The experience reinforced his desire to stay in immunology, especially after having taken the most toxic chemotherapies.
"They worked, and I could tolerate them because I was young, but people who are older can't," Schreiber said. "The whole field of immunotherapy has really demonstrated that there are effective therapies out there that don't come with all of the same toxicities as the original chemo, so it was galvanizing to imagine contributing to finding some of those."
Schreiber went on to complete his MD and PhD degrees from the Sheila and David Fuente Program in Cancer Biology at the Miller School of Medicine and was nominated in 2011 as a Future Leader in Cancer Research by the American Association for Cancer Research. He also has numerous publications in the fields of tumor immunology and immunotherapy.
Sackstein, who was struck by Schreiber's enthusiasm and "boundless energy," predicts he will be a "major player in the world of therapeutics."
"The future for Taylor is amazing because he has the capacity to synthesize current knowledge and understand the gaps and then ask the right questions to establish new paradigms," said Sackstein, currently dean of the Herbert Wertheim College of Medicine at Florida International University. "It's a very unusual talent."
Since then, he has devoted his career to developing innovative techniques aimed at unleashing the immune system to attack cancer with less toxicity than chemotherapy and better clinical results—first, at a company called Heat Biologics and then at Pelican Therapeutics.
His primary work at Austin, Texas-based Shattuck is aimed at combining two functions in a single therapy for cancer and inflammatory diseases, blocking molecules that put a brake on the immune system (checkpoint inhibitors) while also stimulating the immune system's cancer-killing T cells.
The company has one drug in clinical testing as part of its Agonist Redirected Checkpoint (ARC) platform, which represents a new class of biological medicine. Two others are expected within the next year, with a pipeline of more than 250 drug candidates spanning cancer, inflammatory, and metabolic diseases.
Nine years after his own cancer diagnosis, Schreiber says it remains a huge part of his life, though his chances of a cancer recurrence today are about the same as his chances of getting newly diagnosed with any other cancer.
"I feel blessed to be in a position to help cancer patients live longer and could not imagine a more fulfilling way to spend my life," he says.