'My greeting card' is the name of the initiative at the center of the tenth edition of the information and awareness project 'I don't freak out', developed by Biogen and the Onda Foundation, the national observatory on women's and gender health , in collaboration with the Italian Multiple Sclerosis Association (Aism) and with the patronage of the Italian Society of Neurology (Sin). Until June 3rd it will be possible to participate in the initiative and follow it both on the iononsclero.it website and on the Facebook page @IoNonSclero, where a community of over 79 thousand people shares life experiences with multiple sclerosis every day, shedding further light on the true face of this neurological disease which affects approximately 137 thousand Italians, with growing numbers – particularly among the female population – and with a high social impact. The initiative will lead to the selection of the 3 most representative 'greeting cards', whose authors will be appointed Ambassadors of the large online community and will become its spokespersons in a series of information activities.
The large digital support and sharing network dedicated to multiple sclerosis (MS) has grown and evolved in 10 years, in step with changes in the management of the disease. “The tenth birthday of Io non sclero – states Francesco Vacca, national president of Aism – offers us the opportunity to look back at the path that has been taken and understand its impact on the lives of people with MS. Today, thanks to the progress of scientific research, it is possible in many cases to keep the disease under control and people with multiple sclerosis can maintain, in most cases, a good quality of life, with an expectation not far from that of those who do not receive this diagnosis. In these 10 years, important progress has also been made in terms of the rights of people with MS and in the approach to managing the disease, with a view to ever greater personalisation. I am thinking, for example, of the desire for motherhood and pregnancy, which today are generally encouraged and supported among women with MS. Looking to the future, we know that much still needs to be done to improve the lives of those facing MS, with positive consequences for the whole of society.”
The steps forward and future challenges are reflected in the many testimonies shared in the digital spaces of Io non sclero, which provide an authentic snapshot of the current reality of MS: a young and increasingly female disease. The latest findings highlighted in Aism's Multiple Sclerosis Barometer 2023 confirm that, among the new cases, there is an average ratio of 2 women for every man affected by the disease. A scenario that we also find in the community, made up predominantly of women (86%), with continually growing attention.
“The personal and professional path of women is dotted with projects and objectives that a diagnosis of multiple sclerosis risks collapsing, but which today more and more women with multiple sclerosis continue to achieve, going beyond the obstacles posed by the disease – comments Francesca Merzagora, president of the Onda Foundation – The many stories we have collected in these 10 years of Io non sclero demonstrate this and offer a 360-degree account of this complex disease, putting life in the foreground. Our commitment is to continue to support this extraordinary community of women and men, giving space to their desire to tell their stories and underlining the importance of sharing and mutual support. At the same time, we are convinced of the need to generate information and awareness at a social level, so that from an authentic account of the disease arise greater awareness and inclusion”.
For 10 years Io non sclero has been “supporting people with multiple sclerosis – underlines Giuseppe Banfi, CEO of Biogen Italia – We started from scratch, with the belief that we could create a free space available to those who face this complex neurological disease , to share experiences and talk about ourselves in an authentic way. The community shows us every day the importance of this project and makes us increasingly proud and grateful to be part of it. For years we have been engaged in researching therapies for the treatment of multiple sclerosis and we have actively contributed to many of the significant steps that have been taken in the management of this disease. We are fully convinced that our commitment must go beyond the therapeutic sphere to respond 360 degrees to the needs of people who face MS every day. I don't freak out it is an extraordinary example of the importance of this commitment.”
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