Last week, ALAMEDA has been invited to take part to the Italian Multiple Sclerosis Foundation (FISM) 2022 Annual Congress.
Every year in May, on the occasion of the National Multiple Sclerosis (MS) Week, the FISM Scientific Congress is organized in Rome (see 2022 programme here). At this appointment, the researchers supported by AISM and its Foundation (FISM) meet to report on the results obtained from the funded research. In addition, research strategies, collaborations and partnerships at national and international level are discussed and new synergies are promoted, thanks to which it is possible to face the important challenges posed by MS.
The title of the 2022 edition of the Congress was “Connecting MS with other neurodegenerative diseases: together we are stronger” which emphasises the importance of tackling the challenges posed by neurodegenerative diseases promoting coordination and collaboration among research groups and initiatives.
On the first day, we have had the chance to listen and learn about several inspiring international and EU initiatives that altogether are striving for putting neurological diseases at the top of the priority agenda of public health and health research by posing the accent on the urgent need for broader partnerships, multi-stakeholder commitment and policy convergence at both national and international level.
The outstanding line-up of speakers included Giselda Scalera, Director of the DG Research & Innovation of the Italian Ministry of Health who spoke about the concept of “sustainable partnerships” in the Italian national research system and how it materialises in the domain of brain sciences through the Italian Neuroscience and Rehabilitation Network (Rete Italiana delle Neuroscienze e della Riabilitazione, RIN), the country’s largest research network in this field which encourages collaboration between recognised Italian Research Hospitals (Istituti di Ricovero e Cura a Carattere Scientifico, IRCCS), facilitate the spread of information on their clinical and scientific activities, supports and facilitates scientific and technological research and training initiatives, as well as the development of joint projects to improve prevention, diagnosis, treatment and rehabilitation of specific diseases, with an increasing commitment towards responsible and participatory research models.
At European level, Prof Fabrizio Tagliavini offered an overview of the current efforts made towards a Shared European Brain Research Agenda promoted by the EBRA project, partnered by some of the key influential organisations and initiatives such as the European Brain Council and the EU Joint Programme – Neurodegenerative Disease Research (JPND) . The latter is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases, in particular, Alzheimer’s.
When it comes specifically to MS, the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) has served as Europe’s and the world’s largest professional organisation gathering physicians and scientists dedicated to the understanding and treatment of MS for many years. While its top-notch Annual Congress is the core of their knowledge sharing activities, as ECTRIMS President Prof Maria Pia Amato pointed out, ECTRIMS also continuously works towards better healthcare e.g., via the publication of the ECTRIMS/EAN Clinical Guidelines on the treatment of people with MS which latest update has been recently presented at a joint session on behalf of ECTRIMS and the European Academy of Neurology (EAN).
In line with the key congress’ message, all the international speakers have remarked that better coordination and larger investments on cross-national collaboration platforms are going to be crucial in the upcoming years to shift towards a “non-disease, non-age centred holistic and positive approach” (advocated by the EAN Brain Health Strategy as the ‘one brain, one life, one approach’) to prevent neurological disorders but also to preserve brain health and promote recovery and better quality of life after brain damage.
Moreover, the unprecedented growth of digital technologies may not only improve the diagnosis, monitoring and treatment of neurological but is also pivotal to sustain a necessary sizable transition towards efficient and cost-effective prevention strategies, as argued by Pawel Świeboda, Chief Executive Officer of EBRAINS AISBL, an association of Human Brain Project (HBP) partners created to drive the project and ensure the development and long-term sustainability of HBP’s EBRAINS research infrastructure. The EBRAINS platform is a digital research infrastructure co-funded by the European Union that brings together a wide array of data and tools for brain research, which will be an essential vehicle to ensure brain health is a prominent part of the future European Health Data Space.
Last but not least, it is especially emblematic that the FISM Congress took place during the same week as the 75th World Health Assembly which marked a major milestone for all those affected by neurological disorders today, with the adoption of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. As celebrated by Joke Jaarsma, President of European Federation of Neurological Associations (EFNA) – main promoting organization of the One Neurology initiative along with EAN, the Plan aims to improve access to care and treatment for people living with these conditions, while preventing new cases and promoting brain health and development across the life course, thus converting neurological disorders in a major global public health priority.
Overall, we are witnessing an historical momentum: the growing awareness of the burden of brain disorders and the need for quality neurology and better brain health globally offers the perfect ground to undertake bold steps towards the engagement of all relevant sectors and build partnerships with civil society.
In this light, as Paola Zaratin, FISM Director of Scientific Research stressed, the Responsible Research and Innovation (RRI) principles, models and tools may play a crucial role in transforming research decision making and promoting civic participation. Indeed, the Intersectoral Global Action Plan recognises that “people with neurological disorders, their carers, local communities and organizations should be empowered through engagement and consultative mechanisms in care planning and service delivery as well as in policy and legislation development, programme implementation, advocacy, research, monitoring and evaluation”.
The last years have also witnessed the flourishing of novel partnerships where contamination and cross-fertilisation among disciplines is valued and promoted: a perfect example is provided by the “Human Brains” initiative, the result of an intensive investigative process undertaken since 2018 by Fondazione Prada in the field of neuroscience, leveraging the convergence of diverse scientific approaches (neurobiology, philosophy, psychology, neurochemistry, linguistics, artificial intelligence, and robotics). The in-depth research conducted under the guidance of Prof Giancarlo Comi, President of the Scientific Board of the initiative, has culminated in the launch of the scientific forum and exhibition project “Preserving the Brain,” scheduled in Milan for September and October 2022. “Preserving the Brain” aims to stimulate an open and critical dialogue with scientists, experts, and scholars from all over the world on the topic of neurodegenerative diseases, from pathophysiological mechanisms to treatment.
Along with the amazing keynote speeches and round tables, a poster exhibition – hosting the ALAMEDA poster – offered the attendees the opportunity to walk through the promising achievements made by FISM grantees in their efforts to achieve a better comprehension of the disease’s mechanisms, improve quality of life for patients and carers, and ultimately find a cure.
Also, our own MS Pilot Leader, Giampaolo Brichetto, FISM Clinical Director and Coordinator of Research in Rehabilitation, presented the work done so far on Patient Reported Outcomes’ collection and analysis and their crucial contribution to unveil under-researched and still poorly understood aspects and symptoms of the disease.
Finally, on the occasion of the Congress, every year the Rita Levi Montalcini Prize is awarded to a researcher under the age of 40 who has distinguished himself for the activity carried out in his scientific career and for the international relevance of his contribution to multiple sclerosis research. This year, it the selected researcher was Luca Peruzzotti Jametti, Italian neurologist and researcher at Cambridge University (UK) for his research in the area of regenerative neuroimmunology for progressive forms of MS in the laboratory directed by Stefano Pluchino. The award ceremony was preceded by a Lectio Magistralis of his mentor and a curated summary has been published here.
The Italian MS Week culminated with a key appointment with the Italian policy makers: on the 30th of May, World MS Day, FISM presented the Barometer of Multiple Sclerosis and related diseases 2022 to the Italian Parliament, as well as the Agenda of Multiple Sclerosis and related diseases 2025 i.e., the priorities for intervention for the next few years.
It will also be an opportunity to share and adhere to the renewed Charter of the rights of people with MS and related diseases, already signed by over 60,000 people.
The recording of the Congress and the presentations of the speakers will be soon available on the FISM website.
Learn more about the Italian MS Foundation Congress 2022
Download the poster: ALAMEDA poster