A balance of 2021 according to Fightthestroke Foundation

Another year has gone away, another international day of disability, childhood stroke, cerebral palsy, but the numbers of people living with these conditions in Italy are always the same. Or rather, the numbers continue to be vague, based on uncertain sources and with occasional updates: an all-Italian 'data disability' that influences an equally flat narrative on the media and that we will continue to challenge.

Our way not to sink into the shame of the various healthcare stakeholders who keep on celebrating those days by showing children with mismatched socks, was also to put ourselves on the side of rights: we started the year with a new TV and press campaign, sending a strong message to families but also to all the civil society, so that they become aware that a diagnosis of disability at birth cannot dictate the future of our children.

In February we invited everyone to come on board with the #noexemption campaign for an inclusive school, together with a group of associations that challenged the interministerial decree n.182/2020: the flashmob has exceeded 50,000 subscriptions and in September the decision of the court arrived, which accepted the appeal in its entirety and declared the decree and all its annexes illegitimate.

Among the battles carried out for the respect of rights, from May 2021 we have opened a direct channel with AIFA for the management of the Micropam (Diazepam) out of stock, an essential drug for people living with epilepsy and which over the years has always been difficult sourcing in Italy.

We continued to participate in many remote events, such as the adaptive dance project at the United Nations building in Vienna, during the ZeroProject conference: in total in 2021 we took part in 50 events on top of the almost 400 events since the beginning of this mission , a way for us to raise the awareness of people with Cerebral Palsy in civil society, leaving no one behind. In our website you will also find the updated list of the acknowledgments received and the press review, among which we like to remember our role as guest editor for a special issue of Ecolloquia magazine on disability.

In the course of 2021 we also experimented with other forms of online communication, such as the talks on disability and the territory, live on our Instagram channel, and the interviews with the protagonists of the world of disability in Italy from the IG channel of Alley Oop, the female column of the main financial magazine 'Il Sole 24 Ore', with which we have been collaborating for 6 years. Also on Instagram, we ran a new edition of the 'Meet & code' event entitled 'Run, Forrest, Run', to meet in an online marathon the instructors who have been accompanying us for years in adaptive sports and rehabilitation activities.

We have also enriched the #fightthevirus channel with new contents, with exclusive interviews with experts, and this remains to date the most complete repository in Italy for direct in-depth analysis with specialists dealing with Cerebral Palsy.

However, we attended still few events in presence: we remember our first edition of TEDxViaGluck which took up the baton of the historical event TEDMED #Call4Brain; the participation in the 'Ti ribalto' event, with an inclusive self-defense workshop with the bo stick; the meeting of the #fightthestroke young adults group in Milan; the participation at the paralympic sports Fispes Youth School and the winter sports camp, thanks to the promotional activities of the Italian Paralympic Committee, section Lombardy.

With the health emergency slowing down, we cautiously reopened our main intensive camp activity in the summer: the fourth edition of the renown Fight Camp allowed 20 children from all over Italy to participate in our sports and rehabilitation activities; it also represented a professional training opportunity for tutors who took advantage of the Magic Tricks and Habit Course and the Pediatric First Aid course for children with Cerebral Palsy, in collaboration with Salvagente Italia.

After a year like 2020, which forced us to review all our habits and certainties, and  also our professional and human expectations, 2021 saw us looking for a new way. By leveraging our spirit of adaptation, we have thus experimented with new ways of living and working: paradoxically it has been easier for us to deploy resilience, having already had experience of remote and hybrid work, of digital transactions and relationships, of sudden changes and life adjustments, reflections on the priorities of life and respect for the rhythms of others, openness to a change that is always possible.

It is on these premises that in April 2021 we launched the online lessons channel ‘The Fighter’s Gym’: thanks to our operating arm FTS we were able to deliver over 300 online lessons in few months, with the best adaptive sports and dance professionals, para-taekwondo, ocupational therapy, physical therapy and music therapy. An all-female project that has collected part of the Mirrorable legacy, in which we have continued to invest our best resources for future developments. 

At the end of 2020 we also promised to support the recognized role of caregivers in society and to offer new training and work opportunities for young adults with Cerebral Palsy: this is why in 2021 we have carried out two successful initiatives, two webinars dedicated to the world of work, in collaboration with Randstad Italia.

We then continued to promote critical thinking on health within our communities, in every segment of the population, and language education on disability, from schools to the media, up to dedicated webinars within companies.

For us, the promotion of digital health in Italy also passes through the innovation and scientific research projects we support: in 2021 we successfully completed the Accept adapted and sensorized climbing wall project, the chatbot Dottoressa Marta, able to support the requests of our families 7/24, and MirrorHR, the epilepsy research kit now available for free to everyone on the Apple store.

In collaboration with the Developmental Age study 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 Society of Neurological Rehabilitation), AIFI -GIS (Italian Association of Physiotherapists-Group of Interest in Pediatric Physiotherapy), we participated again in 2021 in 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 aim is to arrive at a practical summary of the best evidence on some aspects of care, to improve clinical practice, involving families in the analysis of needs from the beginning. We look forward to contributing to the final drafting of the work and its dissemination in the context of an upcoming consensus conference.

At this link you will find an update of all our initiatives at the end of 2021, with a specific focus on integrated, adapted, paralympic sport activities: https://www.fightthestroke.org/pitch. 

In terms of fundraising, in 2021 we benefited from the multichannel presence and the growth of the digital channel in particular; although collaboration with companies for shared value projects remains dominant, we have also detected the growth of 5x1000 preferences which allowed us to exceed the € 33,000 threshold in 2020.

We have multiplied the possibilities of donations in favor of our mission: through the platforms Benevity, Tiltify, Global Giving, Bright Funds but also through the payment systems as Satispay, Paypal, Stripe and thanks to the support programs for training institutions such as those of Amazon, Coop and Esselunga for school.

From opening to today, the digital store on Worth Wearing has allowed us to distribute over 600 merchandising items in favor of our cause, and almost 1000 scrolls have gladdened your events with a donation to the Fightthestroke Foundation.

Thanks to Google grants, we were able to guarantee the promotion of our content on the fightthestroke.org website also in 2021, to allow families to intercept safe and validated health information in the moment of best need. 

Among the most read newsletters sent to our target of approx. 10,000 beneficiaries, there are:

• Xmas presents - December 2021

• 'cause I'm Italian - November 2021

• Wathever it takes - February 2021

Among the most read contents on our website and on our blog are:

• Guides and faqs on Stroke and Cerebral Palsy

• The different ways of supporting the Foundation

• The Fight Camp

• The testimonies of families and young adults 

The Stroke Center for newborns and children at the Gaslini Hospital in Genoacontinues to be one of the main reasons for the first contact with our Foundation and allows us to intercept cases of perinatal and pediatric stroke, more and more early and give them a name, a cure, a support. In 2021, 200 cases were reported and taken on by the Stroke Center, under the public healthcare system, which were followed by case reports and scientific articles to be published soon.

The presence on social media channels remains essential to reach our beneficiaries and we have therefore increased the reach of our official pages compared to 2020:

Facebook:

Fightthestroke page (8,928 followers - 9,049 people following our official page), Closed Groups Families #Fightthestroke (790 active members) and Young adults #Fightthestroke (76 active members).

Instagram:

Fightthestroke Public Profile (3,365 followers)

Linkedin:

Public page (1,253 followers)

Twitter:

Public page (2,238 followers)

Whatsapp:

Tutors group (53 qualified contacts)

Youtube:

Video channel (460 subscribers and 172 videos)

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

The alliances and networks in which we participate also continue to grow: today we belong to 15 networks and in 2021 we added the environment, access to data, sport, disability in the EU topics to the various central themes for our mission.

AREAS OF FOCUS FOR 2022:

Also in 2022 the core of our initiatives will have to respect the intersection of the 3 guidelines of our values ​​(science - technology - design) with the areas of expertise (perinatal and pediatric 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 with our mission to the 17 sustainable development goals and in particular to:

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

• SDG 4: Equal and quality education

• SDG 5: Gender equality

• SDG 8: Decent work and economic growth

• SDG 10: Reduced inequalities

• SDG 11: Sustainable cities and communities

• SDG 16: Peace, justice and strong institutions

• SDG 17: Partnership for the objectives

We want to become increasingly involved and proactive in the Italian and international activism in favor of people with disabilities, today still too fragmented and not very effective in obtaining systemic changes: we want to do this through a systematization of data on disability, through continuous alliances with networks of European social entrepreneurs on health, with clinical and research centers, with institutions and companies.

We want to scale up the successful model of the Fight Camp, experimenting with new ways, so that it is more and more fluid and pervasive with a limitless reach.

We want to continue to achieve the sustainability of our initiatives by consolidating activities on the FTS platform.

We want to be increasingly attentive to the resources we consume, the environmental causes that can promote stroke, the role of nutrition in prevention and treatment, sustainable city mobility for everyone.

We want to continue to innovate and support scientific research, promoting consensus workshops and conferences that trace the path towards digital health and the best use of the resources allocated by the National Recovery and Resilience Plan (PNRR).

We want to support initiatives for inclusion at school and in the workplace, which fight bullying and discrimination of people with all disabilities.

We want to improve the penetration of sports activity indicators of people with disabilities, favoring the mapping of accessible facilities and the promotion of adapted, integrated and Paralympic sport activities, towards a Milan-Cortina 2026 event that is truly for everyone.

We want to continue to ceaselessly promote scientific dissemination, investigative journalism, the formal and informal training of health workers, the health literacy of children and parents, who are increasingly aware and allied in the common mission of fighting childhood stroke and keep on studying the health determinants that influence the condition of Cerebral Palsy.

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

 

Milan, February 2022