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2022: A YEAR OF IMPACT WITH THE FIGHTTHESTROKE FOUNDATION, FOR YOUNG PEOPLE WITH CEREBRAL PALSY

Roberto D'Angelo

The photo represents a child in red overalls helped to fly by an instructor in the Aero gravity tunnel – photo taken from Aero gravity, Pero - Milan

2022: A YEAR OF IMPACT WITH THE FIGHTTHESTROKE FOUNDATION, FOR YOUNG PEOPLE WITH CEREBRAL PALSY

 

The closing of 2022 is an opportunity to recap the 8th year of mission for the Fightthestroke Foundation and project the vision towards the tenth-year milestone.

 

The year that just ended was for us the one in which we demonstrated that we can scale and make our mission sustainable over time, being beside young people with a disability from Cerebral Palsy and their families.

 

During 2022 we were even more involved and proactive in Italian and international activism in favor of people with disabilities: our Disabled Data project, the result of over a year's collaborative work, has indeed allowed us to order 900,000 data records related to persons with disabilities in Italy and in Europe and to shed light on the urgent need to free up data in order to make the problems manifest.

 

Part of this design has also been made concrete through the publication of a position paper in favor of integrated healthcare for all in Europe, which allows individuals and communities to take on a leading role in their healthcare journey: it was the result of a collective work of a group of Ashoka Fellows committed to solving social problems related to people's health in Europe; over the course of a year we have analyzed the healthcare system in Europe, built a shared vision and worked on various policy recommendations based on our respective competences and on the common goal of putting people's health back at the center.

 

We have continued to collaborate continuously with the main clinical and research centres, in Italy and abroad, and with this objective we have also entered to represent families on the board of the International Pediatric Stroke Organization (IPSO), the main global network of doctors and scientists with expertise in childhood stroke and cerebrovascular diseases. There hasn't been a day that we haven't answered to a request from a family in need, via email or through the mutual aid groups that we moderate on Facebook, discussing with experts to find a solution together or to direct them to the Pediatric Stroke Center at the Gaslini hospital in Genoa. The alliance with the IAPS (International Alliance for Pediatric Stroke) is also fundamental, in which we have participated in the board since 2014 and whose initiatives we continue to support at an international level.

 

2022 was also the year in which the European project AINCP (Artificial Intelligence in Cerebral Palsy) was launched, in which a community of patients and caregivers has an active role for the first time; it is one of the most important scientific researches in Europe which will clinically validate new artificial intelligence algorithms to develop evidence-based clinical decision support tools for the functional diagnosis of children with hemiplegia, building tele-rehabilitation systems at home based on the Action Observation Treatment. The company FTS srl, owned by the Fightthestroke Foundation, has also dealt with the activities of Dissemination, Exploitation, Communications and Outreach (DECO Strategy) in the AINCP project.

 

Among the MirrorLabs research projects concluded and with the results being published, we mention the Giocabile game-rehabilitation platform, supported since 2016 by the Cariplo Foundation, and the adapted and sensorised climbing wall Accept, as part of the Polisocial grant sponsored by the Politecnico di Milano.

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Not only institutions but also individuals: to date we’ve supported dozens of thesis projects by Italian and foreign students, of all levels, from secondary school theses to doctoral theses; among the various projects we mention the thesis by A. Coda on diaphragmatic breathing for the control of epileptic seizures through MirrorHR and the thesis by Pietro Lentini on the user experience of MirrorHR with the Aalto University (Finland) and the Politecnico di Milano.

 

We have activated collaborations with public institutions and private companies, so that our values, the sense of pride and belonging to a community, the non-ableist language also permeate the entire civil society: among the most virtuous examples are the collaboration with Danone, for the feeding tube awareness week; the collaboration with Fastweb, with the theater show 'Stabat pater' by Alma Rosè, on the occasion of the world day of people with disabilities; in January we launched the Ashoka Executive in Residence program with Antonio Mazzola, a partnership initiative between a social enterprise and a pharmaceutical company, based on the sharing of skills, to offer a concrete opportunity for personal growth to Boehringer Ingelheim employees.

 

We have begun testing new solutions for our most important annual initiative, the Fight Camp, experimenting with new methods and new venues, so that it becomes ever more fluid and pervasive throughout the territory. In particular we like to remember the two main summer events:

  • A Pirate Fight Camp: our tried and tested Fight Camp team, led by researcher Eugene Rameckers of Maastricht University, Department of Rehabilitation, moved to the Nave Italia for its fifth edition, to follow 14 young people in the crossing from the port of Civitavecchia to that of La Spezia, from the 2nd to the 6th of August 2022. On our website you will find the results of the project, as presented at the European pediatric Physiotherapy Congress in October 2022.

  • A local initiative in collaboration with PlayMore! in Milan: in the 9 weeks of PlayCamp during summertime, thanks to the Fightthestroke Foundation it was possible to have at least one disabled child participate per week. In fact, 9 children with disabilities between the ages of 7 and 12 yo were welcomed (2 children with autism spectrum disorder; 3 children with psychomotor language and learning delay; 3 children with hemiparesis; 1 child with Down syndrome); the Camp was also attended by other children with psychosocial and relational frailties, often coming from disadvantaged families who did not have a dedicated educator/instructor, still managing to integrate into the group thanks to the expert team of instructors assisted by support figures. Thanks to the Fightthestroke grant, 3 dedicated instructors were also paid, to work side by side with the team of other instructors, facilitating and supporting moments of play, sport, integration with the group of peers.

 

For those we have not been able to physically reach in the area, since 2021 we have activated the services of our Fighters Gym, an online lesson channel which in 2022 was used for 100 lessons with the best professionals for adaptive sports and dance, para-taekwondo, physical therapy and music therapy.

 

We’ve improved the penetration of sports activity indicators for people with disabilities, facilitating the mapping of accessible facilities and the promotion of adapted, integrated and Paralympic sports activities, continuing to collaborate with the Italian Paralympic Committee and the main sports federations. Our kids were able to participate at the CIP summer and winter sports introductory camps; at the first Para-standing Tennis training camp in Turin; at the various annual initiatives of the Fispes Athletics and Football School throughout Italy; at the day 'Sport without barriers - Everyone in his own way' organized by the Tetrabondi Foundation in Rome; and, thanks to the collaboration with the Milan Foundation, also as a special mascots at important soccer events, such as the Champions League match on 2/11 in Milan.

 

These opportunities offered free of charge to our beneficiaries are also the result of the alliance actively promoted by the Fightthestroke Foundation as part of the board of the Sport for Inclusion Network, an independent community that was set up as a second-level association between foundations that promote and support sport as a tool of social and economic inclusion. Thanks to this alliance between over 20 Italian foundations, we can guarantee a broad scope of action on the issues of social inclusion through sport: with a prevalence that concerns the areas of sport and disability (in which 71% of the foundations in the Network are active); a widespread presence on the territory, with 47% of foundations active at national level, 29% at international level, and 24% in specific Italian regions; a high level of productivity of the adhering foundations, which collectively have created or supported over 300 initiatives in the area in the last two years. These initiatives have benefited an estimated number of over 175,000 direct or indirect beneficiaries (mainly disadvantaged people, caregivers, teachers, educators and organizations that provide sports activities, such as ASDs and sports clubs) and have shown a high diffusion capacity, in light of more than 800,000 contacts that the foundations reach through their own special initiatives in the area and their own channels.

 

During 2022 we have been increasingly attentive to the resources we consume, to the environmental causes that can favor stroke, to the role of nutrition in prevention and treatment, to sustainable city mobility for everyone. In collaboration with WWF and SISM Milan (Segretariato Italiano Studenti in Medicina), we organized a Fight Adventure on 25 April 2022, an educational trip to the Oasis of Vanzago, to visit nature and take care of animals and ourselves. Again with WWF Italy we took to the field to rethink urban areas by giving space back to biodiversity, and we did so by participating in the sixth edition of Urban Nature, a nature festival in the city on 8 and 9 October, and through the important new project "Nature takes care" to create Oasis Nature in pediatric hospitals.

 

We have supported inclusion initiatives at school and in the workplace, aimed at combating bullying, discrimination against people with disabilities and all forms of ableism. Among these we recall, for example, the company initiatives promoted together with the employees of Nestlè Italia and Bally; the working tables on pupils with disabilities within Alleanza per l’Infanzia network; the webinar on bullying in a live IG with the girls of the Young Adult group of Fightthestroke; the live broadcasts on the Alley Oop channel on the occasion of Disability Pride month; and the digital exhibition Spex (the self-portrait experience), created during the Fight Camp by Eleonora Rettori who used autobiographical art, photography and video to activate individual and social transformation.

 

We are also proud to have supported a new meeting in Milan of the ever-growing Fightthestroke Young CP people community: we strongly believe that the future of the rights and independence of people with disabilities with Cerebral Palsy must pass through self-determination and listening to our young generation.

 

We have continued to unceasingly promote scientific dissemination, investigative journalism, the formal and informal training of health professionals, the health literacy of children and parents, increasingly aware and allied in the common mission of fighting childhood stroke and studying the health determinants influencing the condition of cerebral palsy.

Always with this goal in mind, in 2022 we enriched the #fightthevirus channel with new content, with 10 new interviews with experts, still maintaining the primacy of the most complete repository in Italy for direct insights with specialists who deal with Cerebral Palsy.

In 2022 our Youtube channel reached 29.9K views (+22% vs 2021), with 5.2k watch time hours (+96% vs 2021) and +126 new subscribers.

Among the most viewed videos with the experts in 2022:

 

Inter-company work also continued with representatives of SINPIA (Italian Society of Child and Adolescent Neuropsychiatry), SIMFER (Italian Society of Physical and Rehabilitation Medicine), SIRN (Italian Society of Neurological Rehabilitation), AIFI-GIS (Italian Association of Physiotherapists-Interest Group Specialist in Pediatric Physiotherapy), to consolidate the Care Pathways for updating the Recommendations for the Rehabilitation of the Child with Cerebral Palsy, published again in 2011 and revised in 2013. The final drafting of the work and its dissemination will take place within the forthcoming consensus conference in 2023, where we hope there will also be evolutions for the bottom-up construction of a National Cerebral Palsy Registry.

We continued to participate in many remote and face-to-face events: on our website you will find the updated list of 2022 events and the press review, together with the awards received.

Among the events in the area we recall our participation representing Italian families at the 76th annual meeting of the American Academy for Cerebral Palsy & Developmental Medicine (AACPDM) which was held in Las Vegas in September 2022.

During 2022 we activated the Erasmus+ KA210 project “READY- SENSITIVE LANGUAGE REGARDING DISABILITY FOR A MORE INCLUSIVE SOCIETY, co-financed by the European Union and created in collaboration with Asociacion Uno and ILA. The first mobility took place in Valencia, Spain, where 8 Italian boys and girls participated with us, to learn the rules of a non-ableist language in an increasingly inclusive society.

 

For us, the promotion of digital health in Italy takes the form of MirrorHR, the epilepsy research kit available free of charge since 2021 on the Apple store. This year the application exceeded 5000 downloads in the 60 countries where it was downloaded, it was localized in 20 different languages and 8 updates were released in 2022, the result of a continuous development process involving other parents and experts in the Fightthestroke community.

This is what some users say about MirrorHR:

  • "I am thankful to have this app. Support is there daily. Bugs are constantly tweaked and updated to make the user experience better. I have tried paid apps, and they offer little support and only monitor tonic-clonic. MirrorHR gives my family more peace of mind when it comes to SUDEP. Thank you".

  • "I have become MirrorHR-addict: I fall asleep more calmly, knowing I have a technological ally. Every night, I see the heart rate trend in real-time and periodically download the data to calculate the average heart rate, correlate it to events , and understand if there are stressful things that worsen the picture. I also find the application very useful for monitoring the post-critical phase in the dark and even if he is asleep. In the morning, I consult the chart, and at a glance, I realize if it was a restful or turbulent night. And then I can write everything down and build a very detailed diary. For me, MirrorHR is a great tool."

 

The MirrorHR team in 2022 was the winner of the BeWonder incubation program which also allowed them to work on the sustainability model together with McKinsey Italia, it was awarded the Forum PA 'Let's break the mold' award and continued to receive communication and services support from Microsoft.

 

In terms of fundraising, in 2022 we increased the penetration of the 5x1000 preferences which allowed us to exceed the threshold of €38,000 raised thanks to the 2021 tax returns.

Since July 2022 we have been among the first recognized entities in the Italian third sector (enrolled to RUNTS) to be enabled for the personal fundraising program on Meta (Facebook and Instagram), while our main sources of fundraising are represented by corporate fundraising, company matching fund programmes, consultancy and training initiatives.

Among the seasonal operations, we supported the Cuore di mamma initiative: on the occasion of Mother's Day, it was possible to purchase a typical Ascoli seasonal product (the 'cacio pizza') and three varieties of heart and brain-shaped biscuits, produced according to the rules of tradition and with ingredients selected by Lorenza Roiati's micro-bakery 'Assault to the ovens' in Ascoli Piceno. All the products, in the two 'Cuore di Mamma' gift packs, could be purchased at the sales point in Piazza Arringo 46 in Ascoli Piceno and online from all over Italy; the initiative was also possible thanks to the contribution of the Carisap Foundation.

Another fundraising channel for us is the digital store on Worth Wearing which this year has been enriched with two new creatives, donated by the artists Galliano Gallo, to celebrate the potential of children with special educational needs, and Aluart, in collaboration with Xbox Italy to promote gaming in the community of children with disabilities.

 

Thanks to Google grants, we were able to guarantee the promotion of our content on the fightthestroke.org website also in 2022, to allow families to intercept more and more quickly usable and validated health information. The CTR (click-through rate) of our campaigns (indicator that detects the relationship between impressions and clicks, i.e. the percentage of clicks on the advertisement with respect to its exposure) continues to confirm a high value (on average 13.96%); therefore remains a high effectiveness of the campaigns and with respect to the interest of the public, with a +18% click, +24% impressions, +30% spent budget.

Thanks to this activity we have balanced the traffic on the site, in the mix between organic search and paid search: the methods of using the site seem to have changed (as for many sites, the duration of the average session and browsing depth are reduced), with a figure going against the trend in the most visited pages, on which there is an increase of 5.46% in the average stay.

 

Our website, localized in Italian and English, reached over 50,000 unique visitors in 2022 (+5% y/y) with 60% of visits from mobile; among the most sought content on the website we mention:

 

The stroke-in-children-guide-e-faq page is confirmed as the most visited, with 16,768 sessions, followed by the FAQ page (+34.32%) and the pages dedicated to MirrorHR, both in Italian and in English.

Among the most searched and most read content on our blog are:

 

This year we have also redesigned the newsletter template, thanks to marketing automation tools and the expert opinion of Palabra's consultants; among those sent to our beneficiaries and allies, we recall the most read:

  • Science and Consciousness – November, 2022

  • We're back! – October, 2022

  • Gaming is a serious business – December, 2022

Presence on social media remains essential to reach our beneficiaries and we have therefore increased all the reach indicators of our official pages compared to 2021:

Facebook:

Fightthestroke Page: 9,358 followers – 9,628 people following our official page, #Fightthestroke Family Closed Group: 878 active members, and #Fightthestroke Young Adult Closed Group: 89 active members.

Instagram:

Public profile Fightthestroke: 4,062 followers

LinkedIn:

Organization page: 2,092 followers 

Twitter:

Organization page: 2,299 followers

Whatsapp:

Tutors group: 53 qualified contacts

Community Fightthestroke: 288 participants

Youtube:

Video channel: 627 subscribers and 189 videos

Other channels: Twitch, TikTok, Pinterest, Telegram, Clubhouse

 

If today we reach a community of over 1,000 families in Italy and have put 10,000 people online who, before our Foundation, thought that cerebral palsy was a neglected condition, this was only possible thanks to a collective vision and strategic thinking that has always aimed at universal systemic change, for all children like Mario.

 

FOCUS AREAS FOR 2023:

Again in 2023 the centrality of our initiatives will have to respect the intersection of the guidelines of our beliefs (science - technology - design - sport) with the areas of competence (stroke - cerebral palsy - epilepsy - disability). Only through continuous dialogue with a board of experts, with the communities of families, children and young adults, will we be able to contribute our mission to the Sustainable Development Goals (SDGs) and in particular will we focus on:

· SDG 3: Good health and well-being for people

· SDG 10: Reduce inequalities

 

We want to keep fighting to support the rights of people with disabilities and fight any type of discrimination, in daily life, at school and at work: we want to do this by continuing to demand the publication of data by Istat with the Italian Disability Register, through the other two mobilities of the Erasmus+ Ready project, through the construction of our open and collaborative event on the occasion of World Cerebral Palsy Day, through psychological support to our families.

 

We want to give dignity to technology as an enabler of relationships and the potential of people with disabilities: we want to do this through the promotion of adaptive video games, as an effective lever for rehabilitation, learning, sociality, career paths; we want to land the Inclusive Tech Lab project, capable of providing answers to all citizens on the conscious use of technology.

 

We want to improve the penetration of sports activity indicators for people with disabilities, continuing in the alliances already established and also focusing on the need for a territorial path that allows young people who have attended start-up initiatives to continue in a competitive sports career.

 

We want to scale up the successful Fight Camp model, experimenting with new methods and continuing to measure the results, offering sport and rehabilitation opportunities for the little ones in Italy and for adolescents abroad, also promoting new disciplines, from adaptive cycling to e-sports.

 

We want to continue to innovate and support scientific research, promoting dedicated publications, workshops and conferences that pave the way towards digital health and the best use of resources in research on Cerebral Palsy, also thanks to the continuous training of families and synergies with other international associations.

 

We want to continue to promote scientific dissemination and investigative journalism, also through collaborations with important Italian schools, the active participation of families of caregivers and patients in congresses, the revision of our manifesto.

 

We want to continue to achieve the sustainability of our initiatives through the consolidation of activities on the FTS platform: even if this means rationalizing the initiatives of online lessons at the Fighters gym or optimizing the acquisition model for new MirrorHR users.

 

We want to start looking at the during and after us, in a path that takes us towards the 10 years of the foundation, in which we would like to no longer be needed.

 

We strongly believe in the organizational model that we have built over the past 8 years, which aims to reduce the fixed costs of personnel and for the operational headquarters, relying on an agile network of volunteers and project collaborators and which in any case allows us to reach all our families through technology. Our mission remains to trace the path, to demonstrate the feasibility of initiatives that until then seemed to be risky or unfeasible, and when successful, get them adopted and replicated by public and private institutions.

 

With affection and gratitude from Francesca, Mario, Roberto and all the families, the young adults with Cerebral Palsy, the professionals and the serial wrestlers of the Fightthestroke Foundation.

 

Milan, April 2023