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

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

Reflecting Parents’ Love | Microsoft Unlocked

The MirrorHR Project: How A Team Of Microsoft Employees Created An Early Warning System For Kids With Epilepsy (forbes.com)

Hackathon project mirrors courage, accelerates progress in the Microsoft Garage Residency – Microsoft Garage

MirrorHR — FightTheStroke

A way to bring peace of mind — and sleep — to parents whose children suffer seizures wins Microsoft Hackathon

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.

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