10-14-2024, 05:51 PM
I would love for this message to reach Elon. I am reaching out for all Laryngectomees. Those who have had their voice box removed due to cancer, or other injuries. A Laryngectomee has had their esophagus restructured to be fully on its own, as well as their trachea, which leaves them to breath out of a hole in their neck.
My friend is a Laryngectomee and it's been quite a traumatic experience for him, although he is happy to still be here with us! Without it, his Squamous Cell Carcinoma, Stage 4, Moderately Differentiated tumor, which was contained to 2.5" of his left vocal cord, would have taken his life in a matter of weeks, possibly even days.
His surgeon told him that approx 100,000/year have this surgery; a small portion of our population in the large scheme of things. In that small number, I have watched this group be left behind by the Medical Industry with remedial and inconvenient ways to "replace" their forever lost voice.
Have you ever tried to not speak? I think our voice is one of the largest things we take for granted. We don't realize how fast conversation goes, until we can't participate in it. My friend will be trying to text his response to a group conversation and by the time he's done texting it, we are moved on 3 more subjects ahead of him. He is easily frustrated by it, and feels left out - He often says he's going crazy in his own head by not being able to get his thoughts out.
The normal "voice replacement", is a small plastic tube inserted between the trachea and the esophagus. A Laryngectomee wears a plastic sticker which holds a filter over their neck hole (the neck hole is called a Stoma). They then can push on this filter and it pushes air through the small plastic device, allowing them to ultimately "burp speak". It works well for most, however, the plastic piece has to have daily care, and has to be replaced in the Dr's office, every 3-6 weeks. It's a lot of maintenance, but it's also a lot of concern if it fails or starts leaking. As well as highly inconvenient because it requires one hand to be pushing on the filter in order to be able to speak.
My friend was excited to find a possible replacement to this spendy and timely upkeep with a company called UltraVoice. They offer a retainer product that allows the recreation of speech. He paid $5,500 for the equipment, had to work with a dentist to have the "retainer" portion made, then had to have it fitted after it was made, then back to the company to get the electronics put in and then back to him finally. It took a couple of months for the complete process.
He just got it and he was SO EXCITED that he was going to get to speak again after 8 months of being without a voice. But the equipment (& the marketing materials) all look like they're right out of 1986. Cheap plastic and the retainer is so large, it hurts his mouth and he looks like a chipmunk with it in. It does seem to work, he can speak and form words - however, they sound very robotic; not human at all; which truly has broken his spirit all over again. Additionally, there is a battery pack, and no matter where he puts it there is a large amount of reverb, so he can't turn the device up and he's barely audible. There's a microphone with it which is supposed to help amplify his voice, but it doesn't seem to help.
The medical industry is an interesting profit maker. If you have breast cancer, medicare will pay for breast reconstructive surgery for you to feel "normal" again, but such a small number of laryngectomees, there doesn't seem to be enough money in the game to help them recover their missing voice; something that is actually extremely helpful in navigating life. Something that everyone needs to make a simple phone call to accomplish anything.
My friend is a dump truck driver. Imagine trying to get excavators to work with him. It doesn't happen unless they stop their work to text him. He can't call to get things fixed at home. He can't call his Dr's office. He can't have a simple conversation at dinner out with friends. He can't tell those he loves that he loves them.
I'm reaching out, Elon, because I think you're truly one of the most amazing men of our time. And I can't help but to think that your Neural AI and this UltraVoice, could EASILY be combined and refined to provide a simple, yet very effective device for these Laryngectomees. UltraVoice says that they are working on AI applications this year that would allow him to "choose his voice", but with the remedialness of the entire company, I feel my friend was taken advantage of and I fear no one at this company is working on any further science to elevate this product. I would hope that with true AI, videos of him speaking would allow for his God given voice to be replicated. While that is his dream, he would be happy just to be heard in a human aspect once again. He's so saddened to think he may just need to remain a mute the rest of his years. He will be 59 soon, so we hope it is many years! The cancer surgery was a huge success and he's in full remission with no chemo and only 3 radiation treatments. We feel he has a long life ahead of him!
We both hope you can help Elon!
Noah & Annie Mae
My friend is a Laryngectomee and it's been quite a traumatic experience for him, although he is happy to still be here with us! Without it, his Squamous Cell Carcinoma, Stage 4, Moderately Differentiated tumor, which was contained to 2.5" of his left vocal cord, would have taken his life in a matter of weeks, possibly even days.
His surgeon told him that approx 100,000/year have this surgery; a small portion of our population in the large scheme of things. In that small number, I have watched this group be left behind by the Medical Industry with remedial and inconvenient ways to "replace" their forever lost voice.
Have you ever tried to not speak? I think our voice is one of the largest things we take for granted. We don't realize how fast conversation goes, until we can't participate in it. My friend will be trying to text his response to a group conversation and by the time he's done texting it, we are moved on 3 more subjects ahead of him. He is easily frustrated by it, and feels left out - He often says he's going crazy in his own head by not being able to get his thoughts out.
The normal "voice replacement", is a small plastic tube inserted between the trachea and the esophagus. A Laryngectomee wears a plastic sticker which holds a filter over their neck hole (the neck hole is called a Stoma). They then can push on this filter and it pushes air through the small plastic device, allowing them to ultimately "burp speak". It works well for most, however, the plastic piece has to have daily care, and has to be replaced in the Dr's office, every 3-6 weeks. It's a lot of maintenance, but it's also a lot of concern if it fails or starts leaking. As well as highly inconvenient because it requires one hand to be pushing on the filter in order to be able to speak.
My friend was excited to find a possible replacement to this spendy and timely upkeep with a company called UltraVoice. They offer a retainer product that allows the recreation of speech. He paid $5,500 for the equipment, had to work with a dentist to have the "retainer" portion made, then had to have it fitted after it was made, then back to the company to get the electronics put in and then back to him finally. It took a couple of months for the complete process.
He just got it and he was SO EXCITED that he was going to get to speak again after 8 months of being without a voice. But the equipment (& the marketing materials) all look like they're right out of 1986. Cheap plastic and the retainer is so large, it hurts his mouth and he looks like a chipmunk with it in. It does seem to work, he can speak and form words - however, they sound very robotic; not human at all; which truly has broken his spirit all over again. Additionally, there is a battery pack, and no matter where he puts it there is a large amount of reverb, so he can't turn the device up and he's barely audible. There's a microphone with it which is supposed to help amplify his voice, but it doesn't seem to help.
The medical industry is an interesting profit maker. If you have breast cancer, medicare will pay for breast reconstructive surgery for you to feel "normal" again, but such a small number of laryngectomees, there doesn't seem to be enough money in the game to help them recover their missing voice; something that is actually extremely helpful in navigating life. Something that everyone needs to make a simple phone call to accomplish anything.
My friend is a dump truck driver. Imagine trying to get excavators to work with him. It doesn't happen unless they stop their work to text him. He can't call to get things fixed at home. He can't call his Dr's office. He can't have a simple conversation at dinner out with friends. He can't tell those he loves that he loves them.
I'm reaching out, Elon, because I think you're truly one of the most amazing men of our time. And I can't help but to think that your Neural AI and this UltraVoice, could EASILY be combined and refined to provide a simple, yet very effective device for these Laryngectomees. UltraVoice says that they are working on AI applications this year that would allow him to "choose his voice", but with the remedialness of the entire company, I feel my friend was taken advantage of and I fear no one at this company is working on any further science to elevate this product. I would hope that with true AI, videos of him speaking would allow for his God given voice to be replicated. While that is his dream, he would be happy just to be heard in a human aspect once again. He's so saddened to think he may just need to remain a mute the rest of his years. He will be 59 soon, so we hope it is many years! The cancer surgery was a huge success and he's in full remission with no chemo and only 3 radiation treatments. We feel he has a long life ahead of him!
We both hope you can help Elon!
Noah & Annie Mae