2023-11-10 16:12:16
The Italian Amyotrophic Lateral Sclerosis Association (Aisla) participated in the “Tempo della Salute”, the event dedicated to the promotion of medicine, health and well-being. An opportunity to raise awareness of ALS, a progressive neurodegenerative disease that affects the “dialogue” between the brain and muscles, compromising movement, breathing, communication and nutrition. Nutrition, in particular, which plays a crucial role in our lives, becomes even more important when we are faced with diseases such as ALS. Eating well is essential for the health of our body and the well-being of our mind. Despite the obstacles that this disease entails – we read in a note – Aisla wanted to talk about it, bringing the testimonies of the prof. Giorgio Calabrese, professor Valeria Sansone, singer-songwriter Ron and Davide Rafanelli, president of Slafood, an association supporting research on ALS.
Ron, just awarded the prestigious Tenco Lifetime Achievement Award, national councilor and testimonial of Aisla for over 15 years, touched the hearts of the public by performing “L’uomo delle stelle”, a song that tells the story of ALS and represents his faithful friendship and his continued support for those fighting against this terrible disease. “Our mission – declared Ron – is to raise awareness of ALS and create awareness of the importance of providing support to people affected by this disease and their families. Dysphagia is a painful and common consequence of ALS, requiring continuous adaptations to eat adequately, which makes it essential to spread knowledge on the issue and promote the search for innovative solutions.”
Dysphagia – continues the note – undoubtedly represents one of the most debilitating consequences of ALS, also leading to serious complications such as aspiration pneumonia. Dealing with it is one of the great challenges that generate anxiety and doubts in the lives of patients and their families. “Proper nutrition can help improve the quality of life of people affected by ALS – said Professor Giorgio Calabrese, international nutrition expert and member of the medical-scientific commission of Aisla – helping them to maintain good muscle strength and prevent dehydration and malnutrition. Additionally, a balanced diet can help relieve ALS symptoms, such as tiredness and muscle stiffness.”
This is confirmed by the words of the touching testimony of Davide Rafanelli, president of Slafood and a person with ALS: “The disease – he claims – must not be seen as a tragedy, but as a part of life that has value. It is normal to get sick, try to cure yourself, be afraid and believe in research. But it is also normal to have the courage to fight beyond the disease. Life could become more difficult but also more intense. We must live with serenity and positivity, giving ourselves to others. Let’s support research into ALS together, helping doctors and science to find the ‘right recipe’. Let’s team up, let’s give ourselves to each other to be ever more united.”
Also present at the talk, connected from the United States, was Prof. Valeria Sansone, at the helm of the Nemo Center in Milan, active for over 15 years: “It is necessary to network scientific know-how, because it is only by generously combining our knowledge that we can fight the disease and speed up the passage of results from the laboratory to patients.” A value specific to the network of Nemo Clinical Centers – concludes the note – which stand out for the uniqueness of having multidisciplinary and highly specialized healthcare teams in a single department in high complexity. On the eve of World Kindness Day and on the 4th anniversary of the association, Aisla participated in the event “The Obstacle Journey in ALS” sponsored by Zambon Italia, responding to the invitation of the coordinator of the event, Luigi Ripamonti, to reflect on the the importance of “understanding”.
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