The example of Esteban Bullrich
Former Senator Esteban Bullrich never tires of proclaiming that he is part of something much bigger than himself, and that his vocation for service remains intact. Diagnosed in 2021 with Amyotrophic Lateral Sclerosis ( ALS ), his example and that of his family – his wife María Eugenia and his children Agustín, Lucas and Paz – are eloquent. Dedicated to seeing the growth of the foundation they created in 2022 to promote the support of patients going through this difficult disease and to add them as volunteers for new research and studies, a few days ago they participated in a benefit concert for International ALS Day , performed by the Academic Orchestra of the Teatro Colón .
Since the beginning of the Foundation, they have accompanied 726 families , formed 4252 students and professionals and articulated with 34 organizations and a network of 162 volunteers The creation of RegisELA , the first national patient registry created by the institution, includes 529 men and 329 women, but this is an undercount, as the total is estimated to be around 3,000 patients.
It is the most costly disease after Alzheimer's, as it requires a multidisciplinary approach to prolong survival and maintain the patient's independence. The highest incidence occurs between ages 50 and 70, although it can be diagnosed as early as age 40. It affects 3.25 people per 100,000 inhabitants.
In a packed room, patients, family members and hundreds of representatives from the medical and social fields gathered to give visibility to a silent and progressive neurodegenerative disease , known as "Lou Gehrig's disease," which affects nerve cells in the brain and spinal cord. It wasn't just another performance. Wheelchairs were neatly lined up along the sides, and emotions took on an unusual prominence.
José del Rio, Content Director of LA NACION, served as master of ceremonies and thanked the authorities, musicians, and attendees. It was then the turn of Agustina Bugnard , Executive Director of the Esteban Bullrich Foundation , who stated: “We are here for each and every one of the patients and their families, whom we support throughout the country. They are our driving force. Thank you for teaching us so much about your strength.”
After performing works by Bach and Beethoven, with the final chord and a standing ovation as the closing ceremony drew near, Del Rio read part of the epilogue—titled “ The Time Capsule ”—from Pablo Sirven’s book about Bullrich, which projects an imaginary farewell: “I sought to live so I could die saying, like Saint Paul: ‘I fought to the end of the good fight, I concluded my course, I kept the faith.’” Maria Eugenia Sequeiros then took the stage and thanked everyone on behalf of herself and her husband. In another moment of enormous emotion, she dedicated a few words to him: “I know your body is holding back, but your ideas aren’t. Your desire to see a united Argentina hasn’t held back… Your voice is silenced, but your eyes continue to say so much. It’s a miracle.”
“ Life is today " was precisely the slogan of the solidarity event at the Teatro Colón. Love and faith guide and sustain them on this difficult stretch of the road. They are not alone because, out of their own pain, they have taken on an initiative that alleviates the pain of others, and those who can no longer speak for themselves have become their voice. Nor has the former senator abandoned his hope for a united Argentina. Pursuing dreams until their last breath is what drives many human beings. Through his example, Bullrich shows us how much we still have to learn.
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