Using the power of technology to spread awareness on ALS

Lana Murad Bataineh; an Arab mother with ALS beats the odds to empower others.

As a digital publication that has a dedicated focus on technology, its power is no secret to us, nor is its evidence of value. New inventions see the light everyday, further helping humanity and overall enhancing the quality of life.

In this article, one of our frequent contributors, Fatema Ebrahim, shares the story of an incredible woman whose inspiring journey was empowered by the help of a certain technological device. Yes, a device. This device assisted her in accomplishing something major: Writing her book, Choosing Love.

Interested in knowing more about it? Keep reading below.

Meet Lana Murad Bataineh, today’s dose of inspiration. She’s an Arab mother with Amyotrophic Lateral Sclerosis (ALS); a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. The disease is considered to be fatal within two to five years from the time it is diagnosed. Now, 16 years later with the help of Assistive Technology, Lana beat the odds and launched her book documenting her journey.

Assistive Technology with its variety of tools and devices have improved the quality of life and has allowed individuals with ALS and other degenerative diseases to communicate with ease, despite all their limitations. One example is the Eyegaze control systems which are devices that use eye movement to select letters and words on a computer to synthesize speech.

According to the WIPO Technology Trends Report 2021: Assistive Technologies, over 1 billion people currently need assistive technology – this figure is expected to double in the next decade. At the same time, consumer electronics and assistive products are converging, meaning even greater commercialization of these technologies.

Through the Eyegaze Edge technology, Lana was able to gather her journey for years and launch her book to inspire & empower others. The technology enables individuals with ALS and other degenerative diseases to communicate and interact with the world. Not only can they hold conversations by typing messages or selecting pre-programmed phrases, but they can also surf the Internet, and participate in social media using their eye movements.

Bataineh comments about losing her voice: “Despite digging deep into my faith, I could not find the strength to accept that I could not give advice, share a joke, discuss life, have a conversation, congratulate, or simply say “I LOVE YOU” to my children and husband… it was at this moment that my husband and brother found me the Eyegaze computer.” 

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She continues: “I typed my first sentence on a warm summer day at my parents’ house in Amman. With my whole family gathered around waiting anxiously to see how it would work, I was able to say, “I Love You”. I finally had a voice again. With this new voice came immense happiness, new possibilities, and new dreams.” Heartwarming.

Lana  started using Eyegaze to write down her thoughts and feelings on her blog, LoofyOnline. The reaction was overwhelming and with each piece of writing, the readership kept growing. This response was truly life-changing; she was able to express herself after living in silence for so long.

In April 2021, she achieved the unimaginable and published her memoir with international publisher, Austin Macauly, titled Choosing Love. You can order Choosing Love on Austin Macauley, Amazon Worldwide (paperback & Ebook), Neel Wa Furat, Sanad Books and in select online and local bookstores near you.  

We don’t know about you, but Lana’s story gave us all the fuel we needed to be motivated to pursue our dreams — especially during times like our current ones, and we’re grateful for that.

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