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Spain

Queen Sofía participates in video conference for World ALS Day

Queen Sofía of Spain took part in a video conference on Monday to mark World ALS (MND in the UK and ELA in Spain) Day.

The Queen spoke to the general director of the Carlos III Health Institute, Raquel Yotti; the scientific director of CIBERNED, Adolfo López de Munain; scientific director of the CIEN Foundation, Miguel Calero; vice president of the Francisco Luzón Foundation, María José Arregui; and president of adELA, Adriana Guevara de Bonis.

Dr Adolfo López de Munain shared his concern that “many of the strategies that have been used for vaccines against COVID-19 will have consequences in the development of therapeutic strategies for diseases such as ALS.” He also said that COVID-19 research “may be reused to accelerate our research on products that are currently being investigated for amyotrophic lateral sclerosis.”

The Spanish Association of Amyotrophic Lateral Sclerosis (adELA)’s motto is “no ALS patient without home service.” The organisation’s president, Adriana Guevara de Bonis, explained why this is the motto of the organisation: “ALS is a disease that is experienced at home and therefore, care for patients at home is essential.”

Sofía’s namesake foundation, the Queen Sofía Foundation, focuses on raising awareness and money to research neurodegenerative diseases, including ALS, Alzheimer’s, and Parkinson’s disease. Her foundation contributed to the Neurodegenerative Diseases NEURO 2020/22, and the Queen hopes that the event will “serve as an incentive to continue in the effort to achieve the goal of one day defeating neurodegenerative diseases.”

Amyotrophic lateral sclerosis (also called Lou Gehrig’s disease) “is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control,” according to the Mayo Clinic. Symptoms of the disease include difficulty walking, speaking, chewing, and swallowing. A person can have uncontrolled fits of laughter or tears and have cognitive and behavioural changes. Some can eventually also be diagnosed with frontotemporal dementia, as some patients can have memory issues with ALS. Most of the time, the disease begins in the limbs, but it can begin in the latter stages – in the mouth, throat and lungs, which is the most progressive form of the disease.

Life expectancy can range from months to a few years, but the average length of someone’s battle with the disease is three years.

In Spain, around 900 people are diagnosed with ALS each year, and it is estimated that about 3,000 people are battling the disease in the country.

Editor’s note: I have been an ALS Advocate since my mother passed away from the disease in 2016. It is a disease with no cure and no treatment. The world needs more people to help in the fight against this horrible disease. You can learn more about the royals who are participating in the fight against ALS here.

About author

Brittani is from Tennessee, USA. She is a political scientist and historian after graduating with a degree in the topics from the University of Tennessee, Knoxville, in December 2014. She also holds a master's degree from Northeastern University. She enjoys reading and researching all things regarding the royals of the world. She's been researching, reading, and writing on royalty for over a decade. She became Europe Editor in October 2016, and then Deputy Editor in January 2019, and has been featured on several podcasts, radio shows, news broadcasts and websites including Global News Canada, ABC News Australia, WION India and BBC World News.