Join forces for an ALS-free future in Awareness Month. This is the message launched by Aisla – the Italian Amyotrophic Lateral Sclerosis Association to promote the many solidarity initiatives in Italy aimed at deepening, researching and supporting the ALS community scheduled for June. Among the many appointments, the World ALS Day, or Global Day, promoted by the international federation of patient associations, the international alliance of Als/Mnd Associations of which Aisla is a member as an Italian member – reads a note -. Global Day has been celebrated every June 21 since 1997, a non-random date, because the summer solstice brings with it a profound feeling of rebirth and, above all, of hope in a turning point as regards the search for causes, effective treatments and cures to defeat ALS.
In the year in which Aisla’s 40 years of associative life are celebrated “let’s celebrate this day together with eyes of hope but also with awareness – says Fulvia Massimelli, president of Aisla – two feelings that can be regenerative. Together, in fact, they can focus on scientific research, a beacon for our work, and on the answers to the needs of our people, on the support necessary to improve the quality of life of our community”. Numerous initiatives have been promoted by Aisla on the occasion of this celebration which, once again this year, “puts people and their stories at the centre. A full program of events, throughout the Italian territory, from informative and scientific insights, to initiatives in the area”.
ALS is a progressive disease that affects the motor neurons, leading to the progressive loss of the ability to move, speak and breathe. A highly complex healthcare disease that has a significant impact not only on the physical health, but also on the emotional, psychological and social health of patients and their families. “As we celebrate the first 40 years of association activity – continues the note – we will continue to undertake initiatives that remind us that only fear can make us prisoners, because our hope knows no boundaries. June 21 therefore represents a common goal that we remember how ‘we’ makes the difference”.
With awareness, the barriers of ignorance and misinformation about the disease are broken. From this point of view – concludes the note – Aisla pays attention to the figure of the caregiver, the person who assists a relative who is not able to be autonomous in daily life. The International Alliance of Als/Mnd which supports the fundamental rights of people with ALS and their caregivers has asked all members of the world, including Aisla, to participate in the survey aimed at understanding the work that the community does for the people with ALS and their caregivers. A theme dear to the association, that of the role of family caregiver and their rights. In all regions of Italy, numerous solidarity initiatives are planned which make use of the work of many volunteers, families and territorial realities, a symbol of solidarity, love and gratitude towards life.
“I want to acknowledge the tremendous work done by the Als Society of Canada and encourage you to take the time to learn more about ALS and how you can make a difference in the lives of people living with this disease,” said Jean-Yves Duclos, Minister of Canadian Healthcare, headquarters of the International Alliance – The symbol of Global Day is the cornflower, a flower as rare as any of us. The official hashtag of this day, #ALSMNDWithoutBorders, embodies the idea of an ALS without borders. To remember that only by joining forces and working together, can we think for a future without ALS”.