Generales

By: Johansson Cruz Lopera - Journalist

The Neurosciences Group of Antioquia (GNA) will reach 30 years of foundation, and one of its most important assets, the Neurobank, has 460 brains and thousands of samples of tissues, DNA, blood and plasmas, among others. This is the story of the curious birth of one of the most important brain banks in Latin America and its strategy to raise awareness about the importance of donating this organ to science.

One of the characteristics of the GNA Neurobank is that the brains preserved there belonged to the patients treated by the Neurosciences Group before the discovery of their neurodegenerative disease. Photo: UdeA Communications Office / Alejandra Uribe F. 

"Hello, Mercedes* has just died. Are you coming to get her brain?" These were the words heard by the nursing assistant, Lucía Madrigal, on April 13, 1995, around 1:30 p. m. when she answered the telephone located in the Clinical Neurology section of the San Vicente de Paúl Hospital, where she was on duty. On the other end of the line was the doctor on duty at the San Rafael Hospital in Angostura, Antioquia. 

"Pathologist Juan Carlos Arango Viana and I went to the private office of Dr. Francisco Lopera Restrepo, then located in the Carlos E. Restrepo neighborhood, to see what we were going to do. We left Medellín at about 10:00 p.m., certain of the importance of bringing that brain", recalled Madrigal without a hint of doubt in her eyes. 

Dr. Lopera, with the help of Lucía Madrigal, had been treating Mercedes and her family since the late 1980s when, as a Neurology resident at the Faculty of Medicine of Universidad de Antioquia, he came across some cases that caught his attention. Patients with the same characteristics were coming to San Vicente from the north of Antioquia: memory loss, young and with a family history. 

"We realized, when carrying out the genealogies, that there was a gene that caused this disease, Alzheimer's dementia, in that region of the department", said Francisco Lopera, neurologist and coordinator of the Neurosciences Group of Antioquia (GNA), attached to the Faculty of Medicine. With more than a hundred cases from Yarumal, Belmira, Angostura, Santa Rosa de Osos, among other municipalities in the north of the department, there were only two things to prove: that there was a gene and that it was the cause of Alzheimer's disease, a type of dementia that affects 50 million people in the world and that, according to the UN, could reach 150 million in 2050. To raise awareness of this problem, World Alzheimer's Day is celebrated every September 21. 

The distance between Angostura and Medellín is 130 kilometers, that is, approximately three hours by road. That was the time available for the neurologist, the pathologist and the nurse to plan what they were going to say to the husband of the deceased to convince him to donate the brain. During the day, they tried to persuade him, but it was a failed mission. The mayor, the priest and other influential people in the town also tried to help, but he said no to all of them. 

"We decided to travel that same day to the town. We sent him a message so that he would see us at the hospital, and we could explain the importance of this donation. Again, he said no", recalled Lopera Restrepo. He said that if we wanted to talk to him, we had to go to his house.

First brain donated to the GNA Neurobank. Photo: courtesy of GNA.

The problem with that request was that the donor's wake was taking place in that house. "Between coffee and prayers, we talked to him and explained the importance of being able to study his wife's brain. It was vital not to lose that brain because it was a treasure trove of scientific information", noted Lucía Madrigal, now a doctor in Clinical Psychology Research in Family Health and facilitator of the GNA's Social Plan.

The presence of Francisco, Lucia and Juan Carlos began to have an effect. The husband agreed on the condition that his twelve children agreed. Once again, throughout the night of the wake, the neurologist, the pathologist and the nurse, between coffee and prayers, convinced eleven of them. One of them was missing and on his way from Valle del Cauca. 

"What we did was tell the siblings to talk to and convince him. We gave them some time. We told them that we were going to be waiting at the town hospital until noon. If they did not arrive with their mother's body, we would understand that they were not going to donate it", said the GNA coordinator. 

And so it was, around noon on April 14, 1995, the body of the first brain donor of the GNA entered the hospital morgue. "I helped the pathologist hold the corpse while he opened the skull, and Dr. Lopera, sitting on the steps of the room, wrote down what we told him. What really impressed me was the murmur behind the morgue door. From inside, you could hear what people were talking about. While Arango Viana was pulling out the brain and Lopera was documenting the process, all I could do was hope that they would let us out, that they wouldn't do anything to us once the door was opened", Madrigal recalls. 

The Starting Point of the Neurobank 

A year after obtaining that first brain, the GNA, which on October 7, 2022, will celebrate its 30th anniversary, needed more donations to continue with the research they had undertaken with cases of Alzheimer's dementia, which they had been studying for more than 10 years in northern Antioquia. Until then, they had conducted several genealogies with different families, but it was necessary to strengthen the path that had already been marked with the donation of brains. 

For ExpoUniversidad (1996), which was held at the Palacio de Exposiciones of Medellín —today Plaza Mayor— the Neurobank of the Neurosciences Group of Antioquia was inaugurated with just one brain. At least, that is what the giant sign that guarded the GNA stand said. "We had no bank or brains, except for one, but that was the strategy to encourage people to donate their brains once they died", said Dr. Lopera.

That strategy intended to make people understand that they were burying a treasure, the brain, which could be more useful to science. "The goal was to create a campaign to announce that we were receiving brains from deceased Alzheimer's patients. We wanted to tell everyone that there was a Neurobank to study neurodegenerative diseases", said the researcher. 

This bank stores and studies brains, tissues, blood, plasma and DNA used in research on neurodegenerative diseases such as Alzheimer's (memory loss), CADASIL (migraine, cerebral infarcts), Huntington’s disease (involuntary movements), Parkinson’s disease (tremor, rigidity), Wilson’s disease (behavioral changes) and ataxias, among others. 

The bank is located at the University Research Headquarters of UdeA. This biobank is in charge of obtaining human samples for research: sera, plasmas, DNA, biopsies and brains. Some of the samples are kept in ultra-low temperature freezers at -86 °C. 

This biobank, which already has 460 donated brains and thousands of other samples, such as tissues and DNA, is the group's most important asset. For 38 years, they have been monitoring specific populations in Antioquia that have developed hereditary neurodegenerative diseases. They have been monitored from when they are healthy through to when they get sick until they die. "Those brains hold the secrets of everything that happened, and we have that clinical history. That is why the brain is the most important asset of all the research that the group will do in the coming years", said Francisco Lopera.

All samples collected at the Neurobank are stored in refrigerators at temperatures of -80 °C. Photo: Communications Office / Alejandra Uribe F. 

It was Alzheimer's  

A couple of months after that adventure in Angostura, the pathologist Juan Carlos Arango Viana took that first brain to Boston, United States, to examine and prove that the lady did indeed have Alzheimer's. This news transformed the history of the group. 

In science, findings are grains of sand that contribute to a sea of knowledge. Every day, scientists around the world, from their laboratories, contribute to the study of neurodegenerative diseases with each experiment they conduct. "They do not make enormous discoveries, but they do find data that add up and form a mountain of knowledge that makes it possible to find a treatment", said neuropathologist Andrés Villegas, coordinator of the Neurobank. 

What perhaps Dr. Lopera, Lucia and Juan Carlos did not imagine when they extracted that first brain in Angostura was that, thirty years later, thanks to the Neurobank and many researchers who collected samples from people who had familial Alzheimer's and performed genetic studies, it was possible to diagnose the E280A mutation, the presenilin-1 gene, known as the Paisa mutation. 

As Lucía Madrigal rightly says, the importance of the Neurobank and the donations is that "someday, someone will come with a little bottle and tell these families: ‘Here is the cure for your disease’". 

*Name changed at the request of the family.