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Our StoryWhile we all eagerly await a cure for ALS, those newly diagnosed with the disease will find their path forward to be filled with barriers. As we learned in Washington DC and through our local Texas ALS Association, those with bulbar onset face an almost immediate problem with being able to speak. Having lived with ALS since the early parts of 2014, but today still being able to speak with enough clarity to be understood, I was particularly taken with the idea that this disease is so unpredictable none of us knows how long our ability to speak will last. Getting information is cumbersome and time-consuming. Something had to be done.
And that is why I started Help ALS Speak. To be a resource. To provide information. To take away at least some uncertainty. To help ALS patients get their voice back. During the first five years of my medical treatment, no one mentioned anything of real substance to me about losing my ability to speak, likely because I was still “normal” in that area. Finally, I asked about it and was given some direction to bank my voice with a service like Model Talker and that there were some “devices” out there that would be helpful. |
Of course, the Coronavirus Pandemic was clearly an impediment to face-to-face medical care, resulting in distancing some patients from multidisciplinary care.
Our objectives at Help ALS Speak seam simple on the surface:
As time passes, we will be connected to and become partners with many ALS Associations across the country and those companies who provide Augmentative and Assistive Communication services and devices. For now, we are in startup mode!
In the very near future we hope to provide a seamless process for our pALS to bank, keep, and use their own voices to communicate with all of the partners in their life.
Our objectives at Help ALS Speak seam simple on the surface:
- Get in front of people with ALS
- Help them understand what will inevitably happen during the progression of the disease
- Provide a path to keeping or getting their voice
- Where appropriate, provide financial resources to get them over the finish line
As time passes, we will be connected to and become partners with many ALS Associations across the country and those companies who provide Augmentative and Assistive Communication services and devices. For now, we are in startup mode!
In the very near future we hope to provide a seamless process for our pALS to bank, keep, and use their own voices to communicate with all of the partners in their life.
Our Guiding Principles
Our MissionTo provide
People with ALS (pALS) a path to keep their voice and be heard through Augmentative and Alternative Communication devices. |
Our VisionServing the ALS Community
with the education, connections, and resources so that meaningful interactions with family, medical personnel, and caregivers are not lost due to an inability to speak. |
Our ValuesEmpower people with ALS to speak through technology. It’s free to be kind and compassionate. Treat everyone with respect and dignity. Be a resource for the ALS community by providing information and removing uncertainty.
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Help Make a Change,
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