The Campaign

NeuroGen Brain & Spine Institute and Asha Ek Hope Foundation (a non-profit) are world renowned organisations that support and treat people with motor neuron disease (MND) and other brain and spine injuries. There is a bigger battle than the fatal diseases for their patients. The simple act of communication. So they always felt a need for a simple, accessible and affordable method of communication for patients with an alert mind but a paralysed body. The eye language is specially conceptualised and designed for such patients, their families and caregivers to ease their difficulty in speech. This book will help patients all over the world and spread awareness about their challenges in the most simple form of communication. Blink to Speak is such a solution which is convenient and accessible for all. These guides are distributed to patients for free and is freeing every patient from the limits of paralysis.

Creative Execution

While creating the world’s first language, our priorities were ease, effectiveness and affordability. First we created the alphabets of the eye language. Using eight simple eye movements, we built various combinations that were convenient for patients with any kind of paralysis. We interviewed many patients, caregivers and doctors to choose the messages that will be most useful for patients. Many of these patients require their caregivers to assist them in holding the book, so we kept the design easy to understand even from a distance. Asha Ek Hope and NeuroGen distributed over 1000 books to patients and families. A downloadable e-book is also available for free on organisation's website. The book was shared and distributed in other brain & spine hospitals and personal clinics too.

Results

BlinkToSpeak is a pro-bono effort from Asha Ek Hope Foundation in creating awareness on ALS with a real world solution to solve speech difficulty. This led Asha Ek Hope Foundation for ALS hire around 150 trainers to train usage of eye language to patients, nurses and family. They have received a multitude of volunteer applications from around the world for propagation and translation. Pan-Asian Consortium for Treatment & Research in ALS invited them to present Blink To Speak at June 2018 inaugural conference. Reached 10000 patients associated with NeuroGen Hospital. Media publications like Times of India, Economic Times, others have covered features of this guide to spread awareness & existence of a solution to solve speech difficulty in paralysis patients. WorldALS Day, 6/21, 7000 books, 7 regional Indian languages were launched in an event by NeuroGen Hospital where 40 neurologists, speech therapists and physiotherapists were invited. 2500 downloads recorded online.

We created a new eye language for patients suffering from incurable brain and spine diseases. And made it available for free on the Blink To Speak, NeuroGen and Asha Ek Hope websites. We distributed the guide to nursing colleges and proposed it to be part of curriculum. Volunteers from schools and colleges participated in training patients and caregivers. We have also sent the book to Department of Health to be adopted as a government recognised language. The book has reached 3 million caregivers and families through social media and has been discussed and applauded by major news publications of India.

Blink To Speak was developed after months of research with patients, families, nurses and doctors. After creating some basic eye movements, we gave the book initially to pilot with 70 patients and 3 doctors. They came back to us with feedback on missing messages and difficulty in some eye movements. We made sure that the eye language is easy to use and covers all possible needs and desires of a patient. Our aim was to create the most convenient method of communication even for someone who suffers from a completing paralysed body but an alert mind. Just like it’s purpose, we wanted the call to action to communicate the simplicity and the effectiveness of the eye language. That’s why we named the world’s first eye language, Blink To Speak.