ntervista ai referenti della Fondazione FIGHTTHESTROKE che hanno candidato al Contest 2024 il loro progetto MIRROR HR. MirrorHR è un epilepsy research kit realizzato dai genitori per i genitori di bambini con epilessia: grazie ad un sistema di intelligenza artificiale, permette al caregiver di impostare i parametri e rilevare i sintomi che possono agire da trigger per le crisi epilettiche, avvisando così i genitori in caso di emergenze. E' distribuito gratuitamente in tutto il mondo e funziona su tecnologia Apple. #learningaccessibile #learning #accessibilità #inclusione #tecnologia #digitale #intelligenza #artificiale @olimpyus @DanieleVerdesca
ASSOCIAZIONE ITALIANA EPILESSIA - Sistema di monitoraggio delle crisi epilettiche
Riceviamo molte mail e telefonate di persone che chiedono informazioni su strumenti che possano preavvertire la crisi epilettica.
I genitori vivono con ansia, si pongono continue domande difficili, se il bambino ha una crisi nel sonno, se è solo durante una crisi. La vita familiare si adatta per soddisfare le esigenze del proprio caro, questo può comportare decisioni di vita sfidanti come la modifica o la perdita dell'occupazione, depressione, privazione del sonno e, in alcuni casi, perdita delle relazioni primarie, e divorzio.
In questa nostra newsletter vogliamo parlarvi di uno strumento che aiuta le famiglie a gestire l’epilessia. Vogliamo parlarvi di MirrorHR un sistema di monitoraggio delle crisi creato da Francesca Fedeli e Roberto D’Angelo co-fondatori della Fondazione FightTheStrokehttps://www.fightthestroke.org/fondazione
MirrorHR - Epilepsy Research Kit è un sistema avanzato di monitoraggio delle crisi epilettiche tramite un'app mobile per Apple iPhone, collegata a un dispositivo indossabile, Apple Watch, ideato per offrire ai genitori uno strumento pratico e affidabile nella gestione dell'epilessia nei bambini e di persone che necessitano di supervisione per parametri vitali. Questa soluzione tecnologica è stata sviluppata da Roberto D'Angelo e Francesca Fedeli, co-fondatori della Fondazione non-profit FightTheStroke. La fondazione è stata creata dopo che il loro figlio, Mario, ha subito un ictus perinatale che ha portato a complicazioni neurologiche, inclusa l'epilessia. Lottando con la gestione delle crisi di Mario, i genitori hanno cercato soluzioni per monitorare e gestire repentinamente le crisi, che hanno portato allo sviluppo di MirrorHR durante un hackathon globale di Microsoft nel 2019.
Rappresentazione grafica di MirrorHR in esecuzione su diversi smartphone e un orologio intelligente.
L'applicazione, lanciata nel 2021, è progettata per funzionare con iPhone (iOS 16+) e Apple Watch (WatchOS 8+), consentendo ai caregivers di monitorare il battito cardiaco e altri parametri vitali della persona con epilessia. Gli allarmi vengono impostati dal caregiver, ed attivati quando si verificano anomalie nel battito cardiaco, permettendo interventi tempestivi che possono prevenire complicazioni maggiori. MirrorHR non solo fornisce tranquillità durante la notte ma, attraverso la registrazione dei sintomi e il video-diario, anche dati preziosi che possono essere condivisi con i medici per personalizzare le terapie.
L'applicazione, non essendo un dispositivo medicale ma sfruttando dispositivi ampiamente disponibili sul mercato, è scaricabile gratuitamente da questo link, o direttamente dall'Apple App Store. E' costantemente aggiornato, disponibile in 22 lingue ed è utilizzata al momento in oltre 60 nazioni, da bambini di 6 anni, giovani ed adulti.
L'uso dell'applicazione non solo aiuta nella gestione quotidiana dell'epilessia ma anche nella raccolta di dati che possono essere utili per la ricerca globale. Attraverso l'uso di MirrorHR, le famiglie possono decidere se partecipare attivamente a progetti di ricerca e sviluppo scientifico, contribuendo significativamente all'avanzamento delle conoscenze e migliorare la qualità della vita delle persone con epilessia in tutto il mondo.
Per ulteriori informazione scrivete a info@fightthestroke.org
Associazione Italiana Epilessia - https://www.associazioneepilessia.it
Epilepsy Foundation US: Quarterly Spring 2024
EPILEPSY FOUNDATION
Free Mobile App Can Be Early Warning System for Seizures
Developed by a group of Microsoft employees as part of the Microsoft Global Hackathon, MirrorHR™ - Epilepsy Research Kit for Kids, is a mobile app for Apple iPhone that can be connected to an Apple Watch wearable device to send alerts to parents when a child is experiencing irregular heart rate which may indicate seizure activity. MirrorHR uses biometric data to capture, process, and monitor data for signs of an imminent seizure. These alerts help parents tend to their child before a potential seizure occurs. Roberto D’Angelo’s 13-year-old son, Mario, has experienced seizures since the age of 3. He was born a preemie and was diagnosed with a massive brain stroke at 10 days of age. Since Mario began having seizures, his quality of life, and that of D’Angelo’s and his wife, began taking a toll. D’Angelo felt there was a need for an app that could help them monitor their son’s sleep in case a seizure occurred. In 2019, D’Angelo leveraged the Hackathon to engage a few of his global colleagues to create MirrorHR; the project won the Global Prize. Today, with the support of community of parents, MirrorHR is now operated and maintained by the FightTheStroke Foundation, a nonprofit organization that D’Angelo and his wife founded in 2014.
MirrorHR is available at MirrorHR – FightTheStroke: https://www.fightthestroke.org/mirrorhr-eng
Microsoft Garage Wall of Fame for MirrorHR – Epilepsy Research Kit
MirrorHR – Epilepsy Research Kit
A community-led early warning system for parents of kids with epilepsy
"I have become a 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 correlate it to events, and understand if there are stressful things that worsen the picture."
– MirrorHR app user
About MirrorHR – Epilepsy Research Kit
Parents of children with epilepsy struggle with accessing data and often feel helpless in predicting seizures or ensuring their child receives care as soon as possible should one occur. To attack this problem head-on, Roberto D’Angelo, a Business Program Manager at Microsoft, and his wife, Francesca Fideli, founded the non-profit FightTheStroke.org to connect and share information with other parents with a need to monitor and quickly address seizures like those experienced by their son, Mario.
MirrorHR, originally conceived as a platform to support members of FightThe Stroke, was created during a Microsoft Global Hackathon and nurtured through a Garage Fellowship. To use the MirrorHR app, a child wears a device much like a smartwatch. The device monitors the child’s heart rate and alerts any caregivers through the app when certain heartbeat anomalies occur, while giving to parents full control of the system and the key data to intervene, like the length of the seizure, the possibility to record a video, track emergency medications or even call the doctor. Instead of monitoring a child’s breathing and other activities at night face-to-face – disrupting sleep and more – parents can monitor from another room, but still intervene more readily and effectively.
Key Features
MirrorHR is an app connected to a wearable device that uses artificial intelligence from Microsoft Azure to capture, process, and monitor data such as heart rate that can alert users to telltale signs of potential seizures. The app also monitors other biometric data, sending previously unavailable insights to parents and doctors.
In addition to nighttime monitoring through the app, self-care options like prescription logs and a video diary allow parents to easily record any potential triggers that could have increased the probability of a seizure, so that when reviewing the data with their doctor, the conversation can be data-driven, leading to a more meaningful conversation.
Video
MirrorHR by FightTheStroke and MicrosoftRoberto and Microsoft employee hackers talk about the importance of monitoring and predicting seizures and how the idea for the MirrorHR app and the hackathon prototype can help with quality of life and peace of mind.
Journey
In 2014, frustrated by sleepless nights due to their son Mario’s unpredictable epilepsy, Roberto and Francesca established FightTheStroke.
When they realized the quality of life for their son could be improved with support from an app, Roberto and Francesca conceived MirrorHR using Microsoft Azure.
The name MirrorHR was inspired by the mirroring relationship between a caregiver and a vulnerable patient. Their son was picking up on their sadness and stress, mirroring their emotions. They wanted him to instead see the best from them, their smiles and their willingness to fight for him, instead of their stress and depression.
As an employee, Roberto saw an opportunity to utilize the Microsoft Global Hackathon to make progress on the app. The Hackathon is an annual Microsoft event inviting employees to devote time to developing a new idea. Hackathon 2019 was Roberto and Francesca’s first opportunity to work on MirrorHR with a team of dedicated Microsoft hackers, and it resulted in the project winning Grand Prize and first-place in two additional categories around AI, Health, and Accessibility.
As the app developed, Roberto saw value in a residency – now known as a Garage Fellowship – with The Garage. Ed Essey, Director of Business Value, oversees the coaching of new products from conception to market. Essey worked with Roberto and the core of the project team on how to take MirrorHR to users and caregivers.
Regarding The Garage Fellowship: “The liftoff method … helped this small group of people from diverse backgrounds to quickly unite as a high-performing team. It fostered a strong connection among them based on their values, and the team always communicated openly about what mattered or what required improvement. They established a deep trust and psychological safety in each other, and they were stronger because of it.” says Essey.
Due to their success at Hackathon and growing interest from many families and doctors, the app was handed-off to the FightTheStroke Foundation that improved it further, thanks to their community, and finally made it available, completely free, in 2022. So far it has been downloaded from 36 countries across the globe, proving how big the demand is for this kind of technology and community-led approach where parents and doctors, having the deepest possible knowledge of the condition, design solutions for other parents and doctors in the same condition.
The team is still hard at work, currently looking for additional funding/sponsorship to develop it further and open it to other platforms.
Team
The 2019 Hackathon team Epilepsy Research Kit for Kids (aka MirrorHR) photographed at The Garage on the Microsoft campus in Redmond, WA.
Standing from left to right, Hackathon team members based in Redmond: Joel Gillespie, Maki Roggers, Mervin Johnsingh, Scott Kivitz, Robert Brais, Jessica Glago, Jacopo Mangiavacchi, Pritika Mehra. Kneeling/sitting from left to right: Scott Thompson, Rui Xia, Angie Maddox, Jun Taek Lee. Not pictured: Aditya Singh, Akansha Gawade, Alessandro Bigi, Aroma Mahendru, Devagnanam Jayaseelan, Elena Terenzi, Giuseppe Martinelli, Guenda Sciancalepore, Hervi Icban, Juan Sepulveda, Melike Ceylan, Michael Schmidt, Mikayla Jones, Neil Gat, Ricardo Wagner, Roberto D’Angelo, Spencer Morris. Credit: Photo by Scott Eklund/Red Box Pictures
Press
TG2, Medicina 33 del 24/4/2023
E’ stato trasmesso il 24 Aprile 2023, all’interno della rubrica ‘Medicina 33’ su RAI 2 un approfondimento sulle Paralisi Cerebrali: grazie al servizio a cura di Lidia Scognamiglio e all’intervista in studio con la Dott.ssa Giuseppina Sgandurra dell’Università di Pisa, abbiamo potuto raccontare quanto la Fondazione Fightthestroke si è impegnata a realizzare nei suoi 9 anni di operato a favore di tutti i bambini come Mario.
In particolare si è parlato di:
La tecnologia per raggiungere i pazienti e le persone con disabilità: da poche famiglie in uno dei primi gruppi chiusi su Facebook nel 2014, oggi la nostra community è arrivata a raggiungere oltre 1000 famiglie e 100 giovani adulti in tutta Italia, per non lasciare indietro nessuno.
La tecnologia per curare: abbiamo sviluppato e reso disponibile gratuitamente l’applicazione MirrorHR per l’epilessia, un’applicazione oggi accessibile da 62 paesi nel mondo in cui l’app è stata localizzata; partecipiamo come partner al progetto di ricerca AINCP, il più grande progetto europeo su Intelligenza Artificiale e Paralisi cerebrale.
La tecnologia per la socialità: dal 2022 rendiamo disponibili le lezioni di fisioterapia e sport adattato online alla Palestra dei Fighters, ma ci occupiamo anche di videogiochi e tecnologie assistive per l’educazione e lo sport.
Ecco alcuni links:
Quando decidi di sostenere la Fondazione Fightthestroke con il tuo 5x1000, decidi anche di rendere sostenibili nel tempo questi progetti: quest’anno fai una scelta consapevole, scegli Fightthestroke.
https://www.fightthestroke.org/5x1000
CODICE FISCALE 97688330154
Microsoft on Linkedin
Microsoft Unlocked: Reflecting Parents’ Love
https://unlocked.microsoft.com/hack-the-future/
Reflecting Parents’ Love
The Science Behind
A father’s path to peace of mind
On a cold December night in 2018, Roberto D’Angelo is speeding through the streets of Milan in an ambulance. After an infinite number of sleepless nights, Roberto feels destroyed. He’s exhausted and desperate.
His son Mario is having another seizure. What can he do to really help Mario, to reduce or even prevent these life-threatening emergencies that keep him up most nights? Roberto places his hand on Mario’s heart. It’s beating very fast, like it usually does when Mario has a seizure.
A spike in heart rate could indicate the onset of a seizure.
The biggest fear of parents of children with epilepsy is that a seizure could lead to SUDEP, or sudden unexpected death in epilepsy. Roberto thinks of how he could help calm this fear for himself and other parents.
Back at home, Roberto does some research and discovers that an accelerated heart rate is often linked to the onset of a seizure. He has an idea. His son could wear a device—like a smartwatch—to track his heart rate in an app, alerting him when it surpasses a normal rate.
FightTheStroke
Mario suffered a stroke at ten days old that increased his risk of seizures. He developed epilepsy at age three, which motivated Roberto and his wife Francesca Fedeli to establish FightTheStroke Foundation in 2014.
FightTheStroke is a network for parents of children with cerebral palsy and the conditions associated with it, including epilepsy, to share information and look for crowdsourced but validated solutions.
Roberto has been with Microsoft in sales and marketing since 1998, and isn’t sure how to build an app. How could he make this happen?
Apart from the risk, it’s the fear and fact that you lose your peace of mind. You can’t sleep anymore because you’re always checking if your son is breathing.
Francesca Fedeli
Co-founder, FightTheStroke
Roberto and Francesca believe the best way to help Mario is to help everyone like him and their parents. Through FightTheStroke, they created the MirrorHR epilepsy research kit, a platform to help support the burden of seizures in families like his.
The name MirrorHR was inspired by the mirroring relationship between a caregiver and a vulnerable patient. HR indicates the heart rate variable. As they explained in this memorable TED talk, Roberto and Francesca realized Mario looked to them for guidance. He was picking up on their sadness and stress, mirroring their emotions. They wanted him to instead see the best from them, their smiles instead of their fight.
MirrorHR: The app
In January 2019, Roberto decides to make his idea of a wearable device a reality. He dives into research, but soon discovers the data needed to oversee people with epilepsy is virtually inaccessible.
“Epilepsy research, despite the 50 million people in the world who have it,” says Roberto, “has made little progress in the last 30 years. Think about the number of people who are still drug resistant.”
Part of the problem is the data is fragmented, siloed within IT systems, hospital networks, and geographies.
Roberto knows parents of children with epilepsy struggle with accessing data. They feel as helpless as he does. There is really no way to reduce the frequency of their children’s seizures, much less know when they’re about to occur. Roberto realizes he has the power to change this with his smartwatch idea.
Connecting with fellow Microsoft employees who collaborated on the Hackathon.
Hack the future
As a Microsoft employee, Roberto has the opportunity to enter the 2019 Microsoft Global Hackathon. Here, employees are encouraged to tackle projects that fuel their professional and personal passions. He recruits a team of talented people with personal experiences related to autism, strokes, and surviving cancer. Their research reveals that an app to monitor a child’s heart rate through a smartwatch could work.
I fall asleep more calmly, knowing I have a technological ally.
MirrorHR user
Roberto and his team participate in the Hackathon with the intention of winning the Grand Prize for 2019, the Health AI Hack, and the AI for Accessibility Hack Challenge. And they do! The prize includes an incubation period in the Microsoft Garage for the team to partner with FightTheStroke and PBSF, a leading medical organization in Brazil, as part of Microsoft’s Hack for Good program. This allows employees to volunteer time supporting nonprofit organizations.
Making the dream a reality
A prototype of the app and smartwatch are brought to life. When Roberto finally sees it, he knows it’s going to work. The concept is simple and it’s easy to use. Basically, a child wears a smartwatch. The device monitors the child’s heart rate and alerts their parents through an app when certain heartbeat anomalies occur. The app also monitors biometric data, sending insights to parents and doctors.
Self-care options like prescription logs and a video diary allow parents to easily upload daily occurrences and detect patterns. Azure machine learning extracts information from the videos, detecting patterns and triggers that may impact the likelihood of seizures.
“At night, I discovered that my daughter had minimal seizures that I would never have noticed. When my daughter goes to bed, she is delighted to put the watch on because then she has a lot of fun asking questions. I put a little dog as a dial that I told her guards her,” says a parent who uses the app.
Three years after winning the Hackathon, Roberto is where he wants to be, but there’s still a lot of research that needs to be done. Families around the world are beta testing the device, sending valuable data anonymously to speed development and increase its marketability. The goal is to make it simple to use and as accurate as possible.
“I have become a 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,” says a parent who uses the app.
Roberto wants to create a movement between parents and doctors who care. His goal is to help families like his sleep well at night. So far, parents are getting more sleep, and kids love wearing a smartwatch to bed.
Visit MirrorHR to learn more about and support the project.
Working at Microsoft: empowering our people
Our mission is deeply inclusive: empower every person and every organization on the planet to achieve more. We expect each of us—no matter what our level, role or function is—to play an active role in creating environments where people of diverse backgrounds are excited to bring all of who they are and do their best work.
B Wonder, call per imprenditoria femminile, selezionate 10 startup per sfidare il business gap
B Heroes, l’ecosistema di iniziative a supporto della crescita delle startup italiane, annuncia le 10 startup selezionate per la terza edizione di B Wonder, la terza edizione della call dedicata all’imprenditorialità femminile nata “per superare il business gap divulgando la cultura della leadership femminile”. Le start up – selezionate dalle 140 iscrizioni pervenute – saranno presentate il 5 luglio nel nuovo headquarter di Sisal a Milano (nel quartiere Isola): un momento di induction, in cui le startup potranno conoscere il percorso di B Wonder e ascoltare le testimonianze di alcune startup delle scorse edizioni.
Le 10 startup in finale sono:
Mychalom; un nuovo concept nell’industria calzaturiera in grado di mixare l’esperienza digitale e reale (www.mychalom.it);
TA-DAAN, la destinazione online per l’artigianato contemporaneo (www.ta-daan.com);
Eoliann offre una API (application programming interface) per la stima di probabilità e rischio degli eventi naturali per il settore finanziario (www.eoliann.com);
YA.BE, (Y)ou (A)re (BE)autiful, sull’industria della cosmesi naturale, vegana e priva di allergeni + mindfulness podcast (www.yabebeauty.com);
Clemi’s Market, un marchio Made in Italy biologico di prodotti salutari, vegani e gustosi per colazione e merenda (www.clemismarket.com);
Re4Circular, tecnologia per indirizzare i vestiti usati verso impieghi sostenibili e rendere la moda circolare (www.re4circular.com);
Gaia My Friend, attraverso un’innovativa AI consiglia cosa indossare in base ai gusti e alle emozioni dell’utente (www.gaiamyfriend.com/homepage);
viteSicure, trasformazione dell’esperienza d’acquisto delle polizze vita rendendola accessibile, immediata e self-service (www.vitesicure.it);
Deliverart, piattaforma per gestire gli ordini a domicilio dei ristoranti (www.deliverart.it);
MirrorHR, un’app che permette di monitorare i sintomi delle crisi epilettiche ed informare caregiver e medici (www.ftssrl.eu/mirrrorhr).
Tra i partner dell’accelerazione che supporteranno le startup: A2a, Sisal- Go Beyond, McKinsey & Company, Invitalia, Jakala, Jellyfish, Jeme, Corti e Fumagalli, OneDay Group, Freebly, Gruppo Galgano, Aws e Angels4Women.
In particolare, A2A, life company, a sarà sostenitore del vertical GreenTech & Sustainability. “Per creare un’industria più diversificata e inclusiva e far emergere il potenziale di crescita ed espansione di iniziative guidate e sostenute dalle donne, come A2A riteniamo importante aderire all’iniziativa B Wonder perché è proprio attraverso un’innovazione aperta e responsabile la valorizzazione dell’imprenditoria femminile, ancora minoritaria nel nostro paese, e un’innovazione aperta e responsabile che si favorisce lo sviluppo dei business, oltre a rappresentare una fonte di stimolo per aspiranti imprenditrici” afferma Nicoletta Mastropietro, Chief Technology and Innovation Officer di A2A
ForumPA - Premio "Rompiamo gli schemi 2022"
Roberto D’Angelo, Chief Innovation Officer, volontario e co-fondatore della Fondazione Fightthestroke, ha deciso di fare qualcosa di concreto per supportare le famiglie con bambini affetti da epilessia, come suo figlio Mario. Tre anni fa, dopo tante notti insonni per monitorare il ragazzo, ha ideato MirrorHR, uno strumento che permette a familiari e ricercatori di identificare al meglio i potenziali fattori scatenanti delle crisi epilettiche, garantendo maggiore tranquillità. Grazie all’aiuto di medici e genitori appassionati che, in tutto il mondo, hanno condiviso storie personali e feedback, oggi MirrorHR è disponibile per tutti gratuitamente: una soluzione unica di raccolta e analisi dati a favore delle persone con epilessia, dei loro medici e familiari. Questa esperienza gli ha permesso di sviluppare una sensibilità unica a risolvere i problemi in modo innovativo e fuori dagli schemi.
Un enfoque comunitario y de investigación para detectar y predecir convulsiones con la ayuda de IA
Permitir una mayor independencia para las personas con epilepsia es lo más importante para Francesca Fedeli y Roberto D’Angelo, cofundadores de FightTheStroke Foundation, quienes se propusieron ayudar a su hijo, Mario. En el Microsoft Hackathon de 2019, desarrollaron MirrorHR, una aplicación de investigación de la epilepsia disponible en 13 idiomas y que cientos de familias utilizan a diario en 31 países.
Francesca, Robert y su hijo Mario
La visión de Francesca y Roberto es crear un mundo donde los niños que nacen con discapacidades no sean vistos por sus debilidades, sino por sus fortalezas, no por lo que no pueden hacer, sino por lo que pueden hacer.
Como resultado, MirrorHR es un ejemplo de atención médica dirigida por la comunidad. La epilepsia es una condición compleja, y las familias a menudo comparten desafíos similares, agravados por el hecho de que el tratamiento no ha cambiado de manera drástica en los últimos 40 años.
El objetivo de MirrorHR es reducir la cantidad y la gravedad de las convulsiones en los niños. Para hacerlo, capacitan a los cuidadores y médicos con datos biométricos contextuales. La detección es un elemento crítico, pero por sí sola no reduce el número de incidentes. Reducir el número y la gravedad de las convulsiones es el objetivo final, brindar a las familias una mejor comprensión de cuáles son los factores desencadenantes. Con el seguimiento de los síntomas y eventos por parte de las familias, los médicos tienen una comprensión más precisa de sus pacientes.
Las familias graban un diario en video de un minuto, con la IA que juega un papel fundamental en la recopilación de datos de una manera privada y sin fricciones. “La ausencia de fricciones es un criterio clave, las familias como la nuestra viven con niveles muy altos de estrés. Al reducirlo, esperamos devolver un nivel de control. MirrorHR comenzó con nuestro hijo, pero al mismo tiempo en realidad comenzó con las mil familias detrás de nosotros, los médicos y las organizaciones con las que nos asociamos”, dice Roberto.
Su espíritu es hacer crecer la aplicación de manera sustentable, poner la privacidad en el centro y expandir el elemento de comunidad. Su investigación muestra que otro tipo de enfermedades tienen características similares: afectan a una gran población, inversiones que podrían no haber progresado durante el año, lo que hace que las familias se sientan a menudo solas. Como explica Roberto “Para nosotros la comunidad ha sido esencial, también lo era la necesidad de facilidad y poder conectarnos con solo un dispositivo móvil. Nuestro sueño es crear una plataforma para ayudar a otros. Cuando comenzamos esta jornada, nos sentimos solos por completo. Cuando crees que estás solo, te rompe el alma. Pero cuando comprendes que hay al menos otro como tú, comienzas a tener esperanza”.
Angelini Pharma presenta 'Lampi', corto su malattie neurologiche
Oggi, durante un evento organizzato a Milano, presso Anteo Palazzo del Cinema di Milano, Angelini Pharma ha presentato “Lampi”, un cortometraggio con la regia di Paolo Santamaria, per sensibilizzare l’opinione pubblica sulla salute del cervello, in particolare sulle malattie neurologiche, e sullo stigma che ancora circonda chi ne soffre e che spesso porta con sé l’isolamento sia sul lavoro sia nelle relazioni. All’evento hanno partecipato Laura Tassi, presidente Lega italiana contro l'Epilessia, Francesca Fedeli, presidente Fight The Stroke. Con loro, Michela Procaccini, direttrice Medica Angelini Pharma Italia, il regista Paolo Santamaria e l’attrice Marta Bulgherini. “Lampi” sarà presentato questa sera anche a Roma, all’Ara Pacis, in un evento istituzionale. “Lampi” sarà pubblicato sul sito AngeliniPharma.it e Harmoniamentis.com.
Angelini Pharma presents ‘Lampi’, a short film on neurological diseases
Today, during an event organized in Milan, at the Anteo Palazzo del Cinema in Milan, Angelini Pharma presented “Lampi”, a short film directed by Paolo Santamaria, to raise public awareness on brain health, in particular on neurological diseases, and on the stigma that still surrounds those who suffer from it and that often brings with it isolation both at work and in relationships. The event was attended by Laura Tassi, president of the Italian League against Epilepsy, Francesca Fedeli, president of Fight The Stroke. With them, Michela Procaccini, Medical Director Angelini Pharma Italia, the director Paolo Santamaria and the actress Marta Bulgherini. “Lampi” will also be presented this evening in Rome, at the Ara Pacis, in an institutional event. “Lampi” will be published on the AngeliniPharma.it and Harmoniamentis.com websites.
"Lampi", presentato da Angelini Pharma il corto di Paolo Santamaria sulle malattie neurologiche
Durante un evento organizzato a Milano il 10 maggio presso Anteo Palazzo del Cinema, Angelini Pharma ha presentato "Lampi", un cortometraggio firmato dalla regia di Paolo Santamaria, per sensibilizzare l'opinione pubblica sulla salute del cervello, in particolare sulle malattie neurologiche, e sullo stigma che ancora circonda chi ne soffre e che spesso porta con sé l’isolamento sia sul lavoro sia nelle relazioni.
Alla presentazione hanno partecipato
Laura Tassi
, Presidente Lega Italiana contro l'Epilessia,
Francesca Fedeli
, Presidente Fight The Stroke. Con loro,
Michela Procaccini
, M.D. Direttrice Medica Angelini Pharma Italia, il regista
Paolo Santamaria
e l’attrice
Marta Bulgherini
. L'11 maggio, "Lampi" è stato presentato anche a Roma, nella suggestiva cornice dell'Ara Pacis, in un evento istituzionale
Angelini Pharma presenta 'Lampi', corto su malattie neurologiche
Oggi, durante un evento organizzato a Milano, presso Anteo Palazzo del Cinema di Milano, Angelini Pharma ha presentato “Lampi”, un cortometraggio con la regia di Paolo Santamaria, per sensibilizzare l’opinione pubblica sulla salute del cervello, in particolare sulle malattie neurologiche, e sullo stigma che ancora circonda chi ne soffre e che spesso porta con sé l’isolamento sia sul lavoro sia nelle relazioni. All’evento hanno partecipato Laura Tassi, presidente Lega italiana contro l'Epilessia, Francesca Fedeli, presidente Fight The Stroke. Con loro, Michela Procaccini, direttrice Medica Angelini Pharma Italia, il regista Paolo Santamaria e l’attrice Marta Bulgherini. “Lampi” sarà presentato questa sera anche a Roma, all’Ara Pacis, in un evento istituzionale. “Lampi” sarà pubblicato sul sito
Doubling down on accessibility: Microsoft’s next steps to expand accessibility in technology, the workforce and workplace
Microsoft Research has one of the few dedicated accessibility research teams in the industry geared toward user-focused research advancing human-computer interaction. This made innovations like Eye Control in Windows 10 possible, enabling eye control communication for people with ALS. Since 2014, more than 6,500 Microsoft employees have participated in the Ability Hack, creating 1,000 projects like MirrorHR, which identifies potential triggers of seizures in children with epilepsy and advances clinical trial research.
Uma abordagem comunitária e de pesquisa para detectar e prever convulsões com a ajuda da IA
A visão de Francesca e Roberto é criar um mundo onde crianças nascidas com necessidades especiais sejam vistas não por suas fraquezas, mas por seus pontos fortes; não pelo que não podem fazer, mas pelo que podem fazer.
Como resultado, o MirrorHR é um exemplo de assistência médica liderada pela comunidade. A epilepsia é uma doença complexa, e as famílias muitas vezes compartilham desafios semelhantes, agravados pelo fato de o tratamento não ter mudado drasticamente nos últimos 40 anos.
O objetivo do MirrorHR é reduzir o número e a gravidade das convulsões em crianças. Para isso, eles estão capacitando cuidadores e médicos com dados biométricos contextuais. A detecção é um elemento fundamental, mas por si só não reduz o número de incidentes. Reduzir o número e a gravidade das convulsões é o objetivo final, equipando as famílias com um entendimento melhor de quais são os gatilhos. Com as famílias rastreando sintomas e eventos, os médicos têm uma compreensão mais precisa de seus pacientes.
As famílias gravam um diário em vídeo de um minuto, com a IA desempenhando um papel fundamental na coleta de dados de maneira privada e sem atrito. “A facilidade é um critério-chave, famílias como a nossa vivem em níveis extremamente altos de estresse. Ao reduzi-lo, esperamos criar um nível de controle. A MirrorHR começou com nosso filho, mas, ao mesmo tempo, começou de verdade com as 1.000 famílias que nos apoiam, com os médicos e as organizações com as quais nos associamos”, diz Roberto.
Seu ethos é desenvolver o aplicativo de maneira sustentável, mantendo a privacidade no centro e expandindo o elemento da comunidade. Sua pesquisa mostra que outros tipos de doenças têm características semelhantes – impactando uma grande população, com investimentos que podem não ter crescido ao longo do tempo, levando as famílias a se sentirem muitas vezes sozinhas. Como explica Roberto “Para nós, a comunidade foi essencial, assim como a necessidade de facilidade e a possibilidade de se conectar apenas com um dispositivo móvel. Nosso sonho é criar uma plataforma para ajudar os outros. Quando começamos esta jornada, nos sentíamos totalmente sozinhos. Quando você acredita que está sozinho, é de partir o coração. Mas quando você entende que existe pelo menos outro como você, você começa a ter esperança.”
Microsoft Accessibility Blog: A community and research approach to detecting and predicting seizures with the help of AI
Epilepsy is a chronic noncommunicable disease of the brain affecting 50 million people and making it one of the most common neurological diseases globally, according to WHO.
With proper diagnoses and treatment, 70 percent of people living with epilepsy could live seizure free, making access to appropriate care and detection of upmost importance.
Seizures can create challenges for the independence and day-to-day lives of people living with epilepsy. They can also lead to driving collisions, with 0.2 percent of traffic accidents linked to a form of seizure. A team at University of Sydney, led by Dr. Omid Kavehei, set out to answer an important question, “Can we improve the accuracy of seizure detection in epilepsy and can we predict a future seizure?”
According to the law in New South Walkes, Australia – home to the University of Sydney, people with epilepsy must be seizure free for at least 12 months to drive. This seizure free declaration is often based on a rough conversation between a patient and their clinician, with the clinician certifying they have been seizure free for a set period of time and patient reports. Given it’s not uncommon for patients to not remember seizures, or not have a family member or caretaker around with them, the certification process can lead to inaccurate outcomes. The researchers saw an opportunity to challenge the status quo and help clinicians make data-driven decisions.
Boston, 18/2/2022
MirrorHR: An Epilepsy Research Kit Developed by Parents & Doctors for Parents & Doctors
Two-and-a-half years ago, after an infinite series of sleepless nights monitoring his son Mario, Roberto D'Angelo decided that something had to be done to help families like his, dealing with the seizures and epilepsy of their loved ones: an affordable, easy-to-use, tool for better identifying potential triggers and to take back a bit of peace of mind. So, Roberto and a team at Microsoft developed MirrorHR, an epilepsy research kit for parents like himself, in alliance with doctors. Because he believed that the best way to help one kid, like his son Mario, is to help every child like him in the world.
Expert Speakers:
Roberto D’Angelo, Mario's father, FightTheStroke Co-Founder, Director at Microsoft (https://www.linkedin.com/in/roberdan/)
Melike Ceylan-Leamen, Mother of a child who has epilepsy, Microsoft Senior Sales Executive (https://www.linkedin.com/in/melikecl/)
Register in advance for this meeting: https://partners.zoom.us/meeting/register/tZAoc-GqrjosEt15fCPfgeqdKGGSueLrORcn?fbclid=IwAR1hFTuAPcdkVLddVLq4UQdu0t4EQin-YZ38AZVZqPCRo_AKovbWnBT1XvI
Video - testimonianza di Aydin su MirrorHR, Microsoft Canada, 7/5/2021
As we approach Global Accessibility Awareness Day and following our Ability Summit this week, I wanted to share an incredibly, moving story with my colleague Melike Ceylan-Leamen. I encourage everyone to watch her journey with her son, Aydin and how MirrorHR—a tool built on Microsoft Azure and AI has helped. Through the collection and processing of data, MirrorHR shares an alert when an anomaly is detected, which in turn helps her and healthcare providers reduce the amount and severity of Aydin’s seizures. Thank you for sharing your story with us Melike.
With our recent announcement of a new technology-led five-year commitment to create and open doors to bigger opportunities for people with disabilities—we will continue to push the limits of AI and accessibility to enable transformative change and empower others across the world. #MicrosoftAI#Azure