Image description: the opening image represents a child with hemiplegia holding a biscuit in his hands and wearing a red shirt depicting the reindeer Rudolph.
Physical distancing did not stop us: how 2020 went according to Fightthestroke
We will remember 2020 as the year when everything was fluid: school, home, office, therapy, all in the same environments, in a flow of prevailing emotions between fear for the present and uncertainty about the future. Nevertheless it was the year in which we all felt a little more equal, in which we shown the 'others' how to cultivate resilience, how to overcome the lack of contact through technology, how to live in constant curfew.
2020 was indeed a devastating year for global health. A previously unknown virus has spread around the world, exposing the inadequacies of health systems. Today, health services in all regions are still struggling, both to address COVID-19 and to provide people with vital care.
The risk we have taken in recent months has been mainly in the threat of the pandemic to reverse the global progress made in health over the past two decades, for example in improving maternal and child health or in addressing the main social and environmental issues that affect some sections of the population suffer much more than others.
Among the priorities worthy of attention according to the World Health Organization, we certainly feel involved in these major issues:
This pandemic has proven us that no one is safe until everyone is safe. It will be important to strengthen the mechanism of global alliances and solidarity, in data sharing as well as in protecting the population from infodemics, in order not to be caught unprepared again.
The COVID-19 pandemic has drawn attention to the deep disparities that persist between different classes of populations (with particular reference to people with disabilities and their caregivers) and we think that in 2021 it will be important to focus on the measures that the health sector can take to ensure equitable access to quality health services across the continuum of care, addressing the social and environmental determinants of health.
The devastating impact of the pandemic and the limitations that come with it, such as economic security, fear and uncertainty on the mental health of people around the world, has prompted us to increasingly support physical and mental healthcare services by our communities.
2020 was also the first full year of the Foundation and of the start-up FTS (48% owned by the Foundation), in which we’re still collecting resources from the previous years: despite the impact of expenses, higher than planned, the fundraising for the Foundation benefited from the exceptional credit of 5x1000 funds for the years 2018 and 2019 (€ 28.725 with 432 preferences in 2018 and € 30.342 with 517 preferences in 2019). Donations received on an exceptional basis for the management of the covid-19 emergency in Italy should also be highlighted, coming from international organizations such as the Global Good Fund and Making More Health.
The coronavirus emergency starting from February 2020 has had repercussions on the lives of all of us and on our way of working, indeed we have experienced the difficulty in working on advocacy, mainly due to the lack of events, conferences and congresses in presence, which in the past have taken up most of our time. The covid-19 emergency also led to an organic decline in the sections of the site that detect the ackowledgments and the press review: people traveled less, talked less and focused on core needs.
The response to the emergency immediately saw us also active on online channels, without however changing the objectives of our mission: we opened the online channel #fightthevirus which in a short time became known as the most important repository of validated video information in Italy, in our sector, a way to continue to be close to our beneficiaries with concrete actions.
However, the needs and behaviors of our online users changed and we’ve also read these signals in the insights of Google Trends: having to deal with a constantly changing reality, which affects what people can or cannot do, our beneficiaries have not only looked for the latest information to stay up to date, but also for alternative ways to meet their immediate needs. Throughout the pandemic, we have seen an acceleration in digital adoption by our families, with an additional interest in digital innovations that can facilitate people's lives and eliminate non-essential contacts.
Among the most read articles of our blog we can highlight:
HOW TO MAKE YOUR TELE-REHABILITATION SESSION A SUCCESS (10-Apr-20, 2490 views)
STRIKE THE STROKE, GIVE WHAT YOU CAN AND YOU WILL HELP US BUILDING THE FIGHTERS GYM (29-Oct-20, 981 views)
CALL4BRAIN / TEDMEDLIVE 2020 ON MAY 30, ONLINE (10-May-20, 656 views)
Among the most read newsletters sent to our base of approx. 10,000 beneficiaries, there are:
Together towards the next decade, on 16/1/2020
TEDMEDLive 2020 in Milan, on 23/2/2020
Always be there, on 24/5/2020
Traffic on the website www.fightthestroke.org also increased in 2020, thanks to the SEO and SEM activities carried out in previous years (source: Google analytics):
Thanks to free Google Grants credits, we have also improved the search parameters that allow us to be found by families in times of need: below is the increase in paid traffic from Google and the most read pages for all sources of traffic:
Image description: the attached images show the Google Analytics graphs as described in the text above.
Image description: the attached images show the Google Analytics graphs as described in the text above.
The last few months of the year saw a decline in some traffic parameters due to problems on the Google account not depending from our organization and in the English section of the website (reorganization of content and new content localization strategy).
The website also shown increased requests for the day hospital service at the Gaslini Stroke Center, for the promotional area and for solidarity gifts on WorthWearing store.
The presence on social media channels remains essential to reach our beneficiaries and we have therefore consolidated these properties too:
Facebook: Fightthestroke page (8,443 followers), Closed groups Families #Fightthestroke (700 active members) and Young adults #Fightthestroke (60 active members) - we also took an exam to obtain the certification as Facebook Certified Community Manager, to guarantee the way we professionally manage online relationships even in informal and mutual help environments.
Instagram: Fightthestroke public profile (2,356 followers)
Linkedin: Organization page (1,024 followers)
Twitter: Organization page (2,204 followers)
Whatsapp: Tutors group (35 qualified contacts)
Youtube: Video channel (352 subscribers)
Other channels: Twitch, TikTok, Pinterest, Telegram
Image description: the image shows the 9 most successful photos from our Instagram profile in 2020.
Among the objectives that we set ourselves in 2019, there was that of having an increasingly broader view of alliances, even at a global level: between patients, caregivers, doctors, researchers, innovators and policy makers. Here is an update on the 13 networks we belong to today: https://www.fightthestroke.org/fondazione.
We’ve also improved these services for our beneficiaries and in collaboration with our supporters:
We’ve enriched the donations page with further support possibilities (e.g. donate school vouchers, donate with Satispay, donate the book 'Lotta e Sorridi', in a new reprint of the paper edition) and with a Donorbox landing page that improves experience and traceability of donations.
We’ve developed an online and offline training package dedicated to the issues of Diversity & Inclusion in the companies.
We’veupdated the books section of the website with the publication of the book 'Purpose mindset' by Akhtar Badshah, which also reports Fightthestroke among the exemplary stories of employees who changed the world.
Our collaboration with the women's blog Alley oop of the main Italian financial newspaper Il Sole 24 Ore continued, over there we discuss issues related to disability: of particular importance are the contents conveyed on the occasion of the International Day of Persons with Disabilities (IDPD 2020), which collected the voices of over 20 Italian activists.
Given the impossibility of seeing each other physically, we’ve organized online meetings dedicated to families, such as the webinar on assistive technologies and the cooking and occupational therapy lab.
Our usual TEDMEDLive event #fightthestroke - Call4brain has been moved to virtual edition, for the first time ever in the world. The sixth edition was held in June, offered free of charge to all members.
Image description: the image represents a staircase in a virtual park during a Xmas webinar learning how to cook together cookies with two hands.
During 2020 we continued to work on projects, reducing the costs for fixed collaborations in favor of volunteers and professionals involved in individual projects: at this link you can find an extract of our latest pitch https://www.fightthestroke.org/pitch and in the Mirror-labs area the topics we continue to study https://www.fightthestroke.org/mirror-labs.
These are the main advances relating to the projects:
MIRRORABLE ONLINE: as planned, we continued to seek funding to support the start-up of the online rehabilitation platform Mirrorable, we expect some results on the progress of European projects to arrive in the course of 2021. In the meantime we’ve received the patent underlying the proprietary invention of Mirrorable on 16/1/2020 and the same was given by the inventors to the Foundation on 17/2/2020.
FIGHT CAMP: the third edition of the intensive rehabilitation camps between sport and rehabilitation was very successful, it was held at the end of August in Milan and here you will find a detailed report of activities and results https://www.fightthestroke.org/blogita/manuale-per-far-germogliare-i-talenti-dei-giovani-con-paralisi-cerebrale-infantile-ovvero-come-andata-ledizione-2020-del-fighttcamp
FIGHTERS’ GYM: this is a new project, born in response to the needs of families and young adults with CP, both to follow up on the camp initiatives and to promote adaptive sport, also online; launched in September 2020 in its pilot edition, it benefited from funding linked to the 'matching funds' collection at the end of the year and it will be developed throughout 2021, leveraging the skills acquired in the fields of 'digital therapeutics' and 'adaptive sports'.
MIRROR HR: it was a fundamental year for this project, in which the intrapreneurship period with Microsoft was completed. The project ended with over 160 requests under management, but the app continues to be developed and maintained, before being made available for free to families who live with epilepsy every day.
BOTTOM - DOCTOR MARTA: the project supported by Fondazione Tim and in collaboration with Mondora, Gaslini and Tiresia was launched on 1/1/2020, aimed for the development of a conversational agent that facilitates communication between doctors and patients. During the year we completed the design of the experience, the analysis of needs, the identification of the best technical solutions and the definition of the person-chatbot (Dr. Marta will in fact be the new name that will replace the code name Bot-tom); the project has suffered considerable slowdowns due to Covid-19, like all the initiatives that involved doctors and hospitals in Italy, but we plan to complete it by June 2022.
ACCEPT - POLISOCIAL: the first adaptive and sensorized climbing wall project involved an analysis (state of the art, needs, impact and market) divided into a preliminary and preparatory phase, a second adjustment phase following the first design experiences and prototyping, and a third one at the end of the project. The team completed the preliminary analysis phase, with the involvement of the entire research group and FightTheStroke. Following a desk research, the data collected through interviews with experts (Physiotherapists and climbing instructor) were validated. Based on the results that emerged, specific design requirements were defined for children with CP, focusing on the ergonomic and anthropometric aspects. A workshop with experts was carried out, with the aim of generating ideas on the different ways in which it is possible to stimulate the right movements for the rehabilitation of children with CP during all the moments that characterize the climbing experience. In order to deliver the workshop, tools were designed and the project objectives were developed. The research team and FightTheStroke involved a group of about 20 families with children with CP in two subsequent climbing activities (one preliminary before the COVID emergency; the second in August, lasting a week and in the presence of physiotherapists and rehabilitation experts) in order to gather information on the needs but also on the feasibility of the different project ideas. Finally, the state of the art in terms of technology and rehabilitation was outlined and we identified needs and constraints arising from the peculiarities of the various stakeholders (in particular families and children with CP, gyms/sports centers). During 2021, the wall will be donated to the sport club PlayMore! in Milan, hoping to be able to complete the evaluation phases of exercises in presence and safely with the children.
GIOCABILE - CREW: this is a video gaming platform also useful for rehabilitation purposes, the project has been open since 2016 and in 2020 we completed the mapping of needs on Fightthestroke users and the start of the prototyping phase.
BODYSOUND - POLIFACTORY: Fightthestroke participated in the European Co-design for Society in Innovation and Science project, with the aim of exploring the field of neuromotor enhancement and recovery of children with Cerebral Palsy, through music and applying the proprioceptive principles. The project has undergone some changes, as a result of the impossibility of seeing each other in presence: below is the new updated project timeline.
CARE PATHWAYS: Fightthestroke collaborated with the pediatric section of SIMFER (Italian Society of Physical Medicine and Rehabilitation), as part of an intercompany work with representatives of SINPIA (Italian Society of Childhood and Adolescent Neuropsychiatry), SIRN (Italian NeuroRehabilitation Society), AIFI-GIS (Italian Association of Physiotherapists - Pediatric section), for a work of AACPDM Care Pathway for the updating of the Recommendations for the Rehabilitation of Children with Cerebral Palsy, published in 2011 and revised in 2013. The goal is to reach at the beginning of 2021 a practical summary of the best evidences on some aspects of care, to improve clinical practice, involving families from the beginning in the analysis of needs.
Image description: the image represents the collaboration network for developing care pathways on CP in Italy.
REFUTURE.IT: as organizer and promoter of TEDMED Live in Italy, Francesca Fedeli participated during the period of physical lockdown in ReFutureIT, a proactive, open, non-ideological think tank, created to help public debate and policy makers to refocus on ideas and facts. Her goal was to stimulate the birth of new actions around strategic issues for the Italy of tomorrow. With this in mind, we moderated and edited the table on 'Conscious health', encouraging open dialogue and the development of innovative ideas as tools to arrive at new concrete, feasible, sustainable and non-deployed proposals. Here is the outcome of the works in a video-summary and in a white paper: https://refutureit.org/salute-consapevole/
AREAS OF FOCUS FOR 2021:
The most important projects on which we will focus our energies in 2021 are those reported in the Projects and Mirror-labs section of the website, an area that is always updated: the focus will however remain in the intersection of the 3 main values (science - technology - design) with the areas of expertise (stroke - cerebral palsy - disability):
In addition to the ongoing scientific and technological research initiatives, we want to open up to other sectors that are so relevant to our beneficiaries, and in alliance with other associations in Italy and around the world:
The school and good practices of inclusion.
The recognized role of caregivers in society.
The promotion of critical thinking on health, in every segment of the population.
Language education on disability, from schools to media owners to companies.
Training and job opportunities for young adults with CP.
The promotion of digital health in Italy: because if it is true that Covid-19 has accelerated the digital transformation in the health sector, with a number of individuals trying virtual treatments almost doubled since the beginning of the pandemic, but it is also true that digital adoption is a two-way route, which requires the satisfaction and consent of patients but also operators. And then, as is also stated in an article published on HBR at the end of 2020, we too think that the co-design of programs is the only answer to a changing society.
We will then continue to work on intensive rehabilitation, so that it increasingly contaminates the activities of daily life and through adaptive sport: we will do it in compliance with current regulations, exploiting the enabling power of technology, trying to replicate the successful Fight Camp model in other territories, on different platforms (eg. the Fighters’ gym) and in different periods (eg. Fight Adventures).
We want to involve more and more beneficiaries in the role of Ambassadors, for geographic skills and expertise, on the model of the IAPS network to which we belong.
We are working on an institutional communication campaign that tells everyone what Cerebral Palsy is, in the correct tones and ways, on offline (TV, press) and online (social media) channels.
We also want to cultivate inclusion through reading, with animated, fast and facilitated reading techniques: too often we think of our children as being able only to read pictograms. Here, the spectrum in Cerebral Palsy is much wider and assistive technologies can now compensate and restore the pleasure of reading together.
We want to become more and more involved and proactive in the Italian activism in favor of people with disabilities, today so fragmented and not very effective in obtaining systemic changes: whether through the role of spokesperson or incubator of other emerging realities, 'whatever it takes’.
In short, more and more #fightthestroke and #fightthevirus.
With love and gratitude from Francesca, Mario, Roberto and all the volunteers of the Fightthestroke Foundation.
Milan, February 2021