World Savvy
A world without a voice
Have you ever heard of Fragile X Syndrome?
How about Prader-Willi Syndrome?
Or Rett Syndrome?
You are not alone! Before 2016 most people had not heard of ALS either and the total funding was only about 20 million dollars. The ALS association stated that after the Ice Bucket Challenge they raised over one hundred million dollars and only one year later this money directly contributed to finding the gene that causes ALS.
By definition, a rare disease strikes between a few dozen to 200,000 people. That may not seem like much, but with 7,000 rare diseases known and more discovered all the time, almost one in ten Americans has a rare disease.
One side effect that many of these diseases share is the loss of voice. Therefore, until these diseases are cured we need to help these people speak and give them back their individuality. Up until now, the only way people could get their voice back was by sounding like a robot.
Most of the research to cure these diseases has been underfunded because the companies don't make enough profit on them. They perfer to focus on more common and profitable problems.
Recently, great technological strides have been made to provide unique voices for people who have lost their own, where they combine the affected person's voice with a healthy donor's. This way, even a teenager can help; it's that easy.