The Counseling About SLA project – CASASLA – is part of Amiotrofica’s lateral sclerosis research efforts to develop custom design systems for the generation of cellular and mouse models for biomedical research, particularly for SLA and SMA (Spinal Muscular Atrophy).
In the course of the studies, however, the working group has often interfaced with families who have a SLA or SMA patient who are often not prepared for the terrible psychological impact that the pathological process of physiological decay creates.
In fact, this kind of destabilizing disease involves from the beginning both the patient and the family into management, care and decision-making of therapeutic activities. CASASLA project will operate not in a cure “disease” but as a supportive of a growing psycho-social problem.
CASASLA realized that some useful tools are needed to:
– Getting to know families with innovations in science and technology for SLA and SMA.
– Developing a network of professionals (doctors, psychologists, counselors, scientific and medical communication practitioners) who talk each other to make a more effective therapeutic intervention plan.
– Achieving circumstances of dialogue and comparison between stakeholders (families, patients, healthcare professionals, Pharma companies).
– Establishing a communication, information and training plan to make it easier for sick people and family members to live.
Thanks to the CASASLA project, which will be delivered free of charge to patients’ families, it is meant to draw attention to the company, with the prospect that may become an interest to investors, credit institutions and institutions interested in believing in industrial research of diagnostic and therapeutic approaches for the cure of SLA and SMA.
A pilot roadmap of counseling activities will be developed to link the research world, the pharmaceutical companies and the families of the patients with their specific needs along with some suppliers and partners.
The partnership and the agreement signed with the group of psychologists and counselors led by Professor Angelo Compare, professor of clinical psychology at the University of Bergamo, member of the EFPA (European Federation of Psychologists’ Associations) will be essential.
Counseling work will be organized around events and meetings designed to form a training and intervention plan directed to the members of the families who take care of the person sick of SLA or SMA, as well as the training of professional figures could provide effective assistance Domiciliary (SAD), specialized in this kind of pathology.
In this way, new job opportunities for unemployed or unemployed could be opened. The alliance with Article 1, a company with a strong territorial presence, could provide venues for workshop events and frontal training as well as useful tools for the selection and training of new professional figure to be included in the workplace.
The CASASLA project is also foreseen to create an appropriate WEB communication facility that exploits all traditional channels of popular disclosure (Facebook, Twitter, YouTube) but also uses innovative tools such as the Open Innovation Platform of the Lombardy Region, adhering to Community: Technologies enabling new therapeutic actions.