According to a story from ALS News Today, the nation of Sweden is starting to emerge as a leader for amyotrophic lateral sclerosis (ALS) research in Europe. This is mostly due to the Karolinska Institute’s ALS research program, which is helmed by Dr. Caroline Ingre. The nation’s researchers have also been instrumental in starting a patient biobank and registry program, which provides a valuable trove of data for scientists to study the illness. However, Dr. Ingre says that patients are playing a major role as well, and cites patient Mia Mollberg as a valuable volunteer that has helped the scientific community.
About Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of amyotrophic lateral sclerosis, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis ranges from two to four years, but some patients can survive for substantially longer. To learn more about amyotrophic lateral sclerosis, click here.
Volunteers Make a Difference
Mia is a well-known figure in the patient community who has gained notoriety for her energy as a volunteer and her impressive collection of tattoos, including one which portrays her as a warrior fighting the disease. Sweden has a population of about 1,000 patients, and Mia has made it her goal to meet with as many of them as possible in order to encourage them to join clinical trials. She meets two times a year with recently diagnosed patients in Stockholm. Mia has been living with amyotrophic lateral sclerosis since 2014.
The Karolinska trials center first opened in 2018 and has since been involved in multiple studies, with no signs of slowing down.
“A lot of patients asked if they could participate in the studies,” Dr. Ingre said, and she claims that Mia’s efforts have played a decisive role. The enthusiasm of Swedish enrollment has made Karolinska a popular trial site. Mia has also been reaching out to the patient communities in nearby countries as well.
