WHAT WE WILL REMEMBER ABOUT 2023 WITH THE FIGHTTHESTROKE FOUNDATION: ALWAYS ON THE SIDE OF YOUNG PEOPLE WITH CEREBRAL PALSY AND THEIR FAMILIES.

The closing of 2023 allows us to take stock of the first 10 years of mission for the Fightthestroke Foundation, with a new perspective.

As in the last 9 years, today we also take the opportunity of this 2023 budget to collect and share the objectives achieved by our Foundation.

 

This year we continued to support the rights of people with disabilities, even beyond Cerebral Palsy, and to combat any type of discrimination, in daily life, at school and at work: in fact, dialogue with institutions and companies continued for the publication of data concerning people with disabilities in Italy, following the investigation resulting from the Disabled Data project, which led to the publication of the quizzes during the year, an in-depth analysis on the financial newspaper Il Sole 24 Ore and a working group launched together with Istat and Microsoft; with the last two mobilities in Italy and the Netherlands we concluded the Erasmus+ Ready project on non-ableist language education, thus releasing the DisLang app and a talk by a young adult with CP which went viral in a short time; we built our own open and collaborative event during the World Cerebral Palsy Day; we promoted free psychological support to our families thanks to the activation of the online channel with the psychologist in the Fighters Gym (16 lessons provided from November 2023). Have been also crucial the new alliances with the International Cerebral Palsy Society and the participation in the family forum of the European Academy for Childhood Disabilities.

 

We have continued to give dignity to technology as an enabler of relationships to fully enhance the potential of people with disabilities: we have done so through the promotion of video games and e-sports, as an effective lever for rehabilitation, learning, sociality, professional paths ; we landed the Inclusive Tech Lab project, in its virtual version, capable of providing adequate answers to our families on the conscious use of technology for entertainment and learning. Here is a summary of our road show and the activities we covered during the Games Week and the Sport for Inclusion Week https://www.fightthestroke.org/blogita/lesperienza-del-virtual-inclusive-tech-lab-e-la-promozione-di-sports-ed-e-sports-adattati; and here is our streaming charity marathon, in collaboration with XBOX and Twitch https://www.fightthestroke.org/blogita/ma-le-persone-con-disabilita-giocano-ai-videogiochi.

 

We have improved the penetration of indicators of sporting activities for people with disabilities, continuing with the alliances already established and also focusing on the need for a territorial path that has allowed young people who have attended the start-up initiatives to continue with a competitive sporting career. During 2023, our children represented the largest community of people with CP who participated in events such as Dynamo Camp, Fispes and Bimbi Sperduti football and athletics schools, summer and winter start-up campuses promoted by the Italian Paralympic Committee, initiatives promoted by the Sport for Inclusion Network partners and swimming courses promoted by Finp and Polha Varese.

 

We have scaled up the successful Fight Camp model, experimenting with new methods and continuing to measure the results, offering sports and rehabilitation opportunities for children in Italy and for teenagers abroad (in collaboration with CP Soccer Camp in the United States), promoting new disciplines, from adapted cycling to e-sports.

 

We have continued to innovate and support scientific research, promoting dedicated publications, workshops and conferences that have paved the way towards digital health and the best use of resources in research on Cerebral Palsy, also thanks to the continuous training of families, synergies with main clinical and scientific research bodies and alliances with other international associations. Worthy of specific mention is the active participation as a partner in the European project 'Artificial Intelligence in Cerebral Palsy' (AINCP), which allowed over 100 Italian families to participate in the recruitment phase of the largest European study on Artificial Intelligence and unilateral Cerebral Palsy.

 

We have continued to incessantly promote scientific dissemination and investigative journalism, also through editorial collaborations, the active participation of families and of caregivers and patients at conferences, the continuous revision of our manifesto, participation in the Canadian course 'Family Engagement in Research'. Among the various opportunities for media visibility we remember an in-depth report on the AINCP project on TV national broadcast Rai-Medicina 33 and a report on health activists broadcast on La7D. Our TED talk, which for the first time represented a child with CP on this stage, celebrated 10 years and 1,284,000 views this year. Our content production is still active on the pediatricians' magazine 'UPPA' and on the women's portal of Il Sole24Ore 'Alley Oop'.

 

We continued to promote the sustainability of our initiatives through the consolidation of activities on the FTS platform: we did this by rationalizing the Fighters’ Gym online lessons platform, which has become a showcase for the consultants we recommend to families; we have optimized the MirrorHR new user acquisition model on the Apple Store; we continue to use more efficient marketing automation solutions and applications for our website.

 

We have begun to look at the during and after us stage, on a path that is ferrying us towards an era in which we would no longer be the only welfare actors in favor of people with a disability of Cerebral Palsy and be less and less necessary.

 

We have optimized the organizational model that we built in our first 10 years of history, which aims to reduce the fixed costs of an operational headquarters, counting on an agile network of volunteers and project collaborators and which still allows us to reach all our families through technology. Our mission remains to lead the way, to demonstrate the feasibility of initiatives that until then seemed risky or unachievable, and, when successful, to have them adopted and replicated by public and private institutions.

 

In 2023 we enriched the #fightthevirus channel with new content thanks to 7 new interviews with experts, still maintaining the primacy of the most complete repository in Italy for direct in-depth analysis with specialists who deal with Cerebral Palsy. This year we integrated the Youtube channel with targeted insights on Speech Therapy, Safety, Nutrition, After Us and Mirror Neurons topics, until we reached a total of approximately 20K views and +74 new subscribers in the year. However, the Youtube channel, as well as the search on Google and Meta, are affected by the decline in visits due to the algorithms that block some keywords typical of our sector, and on which we have repeatedly waged battles in favor of all those who work in the intersection of health, children and nonprofits sectors.

 

The inter-society work also continued with over 80 representatives of SINPIA (Italian Society of Child and Adolescent Neuropsychiatry), SIMFER (Italian Society of Physical and Rehabilitative Medicine), SIRN (Italian Society of Neurological Rehabilitation), AIFI-GIS (Italian Association of Physiotherapists- Specialist Interest Group in Pediatric Physiotherapy), to publish the Care Pathways for the Rehabilitation of Children with Cerebral Palsy: the official guidelines, with an introductory letter from us, were finally published and made available for free download from our website in November 2023, after 3 years of consultations and over 800 verified bibliographic references.

 

We continued to participate in many events remotely and in person: here you will find the updated list of 2023 events and the press review, here are the awards received. Among the awards we remember the prize awarded to FTS as an innovative female enterprise, the prize for the best poster on the occasion of the Occupational Therapy Day, the Bomprezzi prize for the in-depth report on technology and PCI broadcast on TG2.

As regards local events, we would like to mention among many others our participation representing Italian families at the EACD Congress in Slovenia, at the AINCP Summer School in La Maddalena, at the Sinpia-Simfer Congress in Milan, at the Fit4MedRob event in Rome, at the Science Festival in Genoa. During the year, we also celebrated offline and online the International Cerebral Palsy Day, the GAAD and the World Day of Persons with Disabilities with dedicated events.

 

For us, the promotion of digital health in Italy takes shape with MirrorHR, the epilepsy research kit available for free from 2021 on the Apple store. This year the application has exceeded 8000 downloads and among the most penetrated countries we find Africa, Middle East and India (35%), followed by Europe (31%) and Asia Pacific (22%): the high use is worth mentioning in Egypt (after localization with an Arab partner) and in Ukraine (also following the conflict). Among these users, 322 families participated in the co-development, 34 million children heartbeats collected, and 85,000 symptoms logged.

 

In terms of fundraising, in 2023 we further increased the penetration of 5x1000 preferences which allowed us to exceed the threshold of €45,000 collected thanks to the 2022 tax returns. Other sources of fundraising include: corporate donations, individual donations, the personal fundraising platforms on Meta and corporate matching funds, the research projects and training initiatives, the tenders, the digital store on Worth Wearing and the initiatives on the occasion of anniversaries. Partnerships with companies continued, both on the training front for DEI issues and on sector-specific collaborations (such as the one with Nutricia Danone on in-depth talks and FAQs for the nutrition of children with CP and with Nestlè Health Services on the occasion of World CP Day).

 

The search for our keywords on Google and the possibility for families to intercept validated health information more quickly this year has suffered a decline, due to the ban of some keywords which have impacted the metrics of the website www.fightthestroke.org: in 2023 we had 44,144 visits, 36,608 unique visitors and 66,236 homepage views.

 

The number of forms for requesting further information from the website has increased, with particular reference to the last part of the year in which the free download of the Manual for perinatal and pediatric stroke was made available (298 requests) together with the new guidelines, Care Pathways on the Rehabilitation of Children with Cerebral Palsy (137 requests).

 

The work on optimizing and automating the newsletters continued again this year, thanks to the pro bono support of Palabra consultants: we sent updates to our subscribers every month, carried out a campaign to reactivate and clean inactive contacts and implemented the DMARC policies: it was worth it, to guarantee a relationship of trust with our readers, who thus showed a higher email opening rate in the last months of the year (56%).

 

Presence on social media still remains fundamental to reach our beneficiaries and we have therefore increased the organic performance of our official properties compared to 2022, despite the multiplication of platforms, the automatic ban of keywords (e.g. acronym CP on Meta) and the progressive infodemic fatigue of our readers.

 

These are the data at the end of 2023:

Facebook:

Fightthestroke page: 9,507 followers – 9,739 people following our official page

Closed group #Fightthestroke Families: 932 active members

Closed group Young adults #Fightthestroke: 88 active members

 

Instagram:

Fightthestroke public profile: 4,544 followers

 

Linkedin:

Organization page: 2,377 followers

 

X/Twitter:

Organization page: 2,276 followers

 

Threads:

Organization page: 521 (from December 2023)

 

Whatsapp:

Group of tutors: 64 qualified contacts

Community Fightthestroke: 288 participants

 

Youtube:

Video channel: 666 subscribers and 190 videos

 

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

 

If today we reach a community of over 1,000 families in Italy and we have networked 10,000 people 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 always aimed at universal systemic change, for all children like Mario.

 

THE AREAS OF FOCUS FOR 2024:

Also in 2024 our keywords will be: science, technology, design, sport, to be able to support communities of people with childhood stroke, cerebral palsy, epilepsy, disability. In particular, technology will increasingly become a transversal enabler, a hygiene factor that permeates all our activities. Our ongoing mission will continue to contribute to the sustainable development goals (in particular SDG 3: Good health and well-being for people and SDG 10: Reduce inequalities), but we want to progressively think about the succession of our organizational model, so that it becomes increasingly scalable, actively involving other families and able to reach different territories.

 

As far as scientific research is concerned, we want to focus on:

• Collaborate with national and international networks on Cerebral Palsy and Disability, also exploring virtuous experiences abroad to contaminate and innovate the Italian scenario.

• Establish a manifesto, an online area dedicated to clinicians and a scientific committee, also aimed at participating as promoters in the alliance of the Italian Academy of Childhood Disabilities.

• Support the creation of a center focused on the early and intensive treatment of Cerebral Palsy in Milan.

• Support research to disseminate the evidence collected so far with the MirrorHR epilepsy research kit.

• Deepen knowledge on Nutrition, Sport, Disability, while offering a nutritional consultancy service to our families.

• Promote research on sports and neurodevelopmental disability conditions, with particular reference to motor coordination in Paralympic swimming.

• Promote bias-free, evidence-based research that bans unvalidated rehabilitation methods, including that in collaboration with the Transmit Australian project.

• Disseminate the Care Pathways on the rehabilitation of children with Cerebral Palsy also in paper form, so that can be present on all the desks of general practitioners and sector specialists.

• Promote the rights, self-determination and mental health of children with Cerebral Palsy disabilities, also through listening to their needs, the wise use of technology and the dissemination of good inclusive practices.

• Actively participate and support sector scientific conferences and facilitate the participation of other families in the community.

 

As far as activism, community and design are concerned, we want to focus on:

• Cultivate the network of associations dealing with CP in the world, promoting synergies with the European CP-ECA and international ICPS groups, but also with other Italian networks, institutions and associations dealing with disabilities, caregivers, siblings, prenatal diagnosis, protection and promotion of our rights.

• Promote trainings on Diversity & Inclusion issues in companies, as well as in school laboratories.

• Evolve the Disabled Data project, through the partnerships already underway but also with the validation of the model scalability in Europe.

• Add new services to the Fighters Gym, such as the extension of the psychologist to children, and speech therapy.

• Celebrate 10 years with a rebranding operation, active listening to community feedbacks, production of an ADV campaign, promotion of initiatives linked to 5x1000, development of editorial content dedicated to children.

• Increase the diffusion of our contents on Youtube, also through new episodes of Fightthevirus talks, and through proprietary channels, such as the newsletter.

 

Regarding sport we want to focus on:

• Evolve Fight Camp towards a scalable social franchising model.

• Participate in crucial events for our community, enabling us to learn new skills, such as the Paris Paralympics or other similar initiatives around the world, with particular reference to European Union countries, Spain, UK and Australia.

• Actively participate in the federation of foundations 'Sport for Inclusion Network' and in the promotion of inclusive sport in schools.

• Support families in personal initiatives that strengthen belonging to the movement and the embodiment of our mission, particularly in the sporting field (e.g. walks, marathons, sports certifications...).

• Study a functional method for everyone, with respect to attending summer camps and support sports instructors in Italy.

 

More than an annual plan, this seems to us to be a vision for the next 10 years but we entrust it to all of you, our supporters: with affection and gratitude on the part of Francesca, Mario, Roberto and all the families, the young adults with Cerebral Palsy, the professionals and serial fighters of the Fightthestroke Foundation.

 

Milan, April 2023