ALS

ALS Crowd Pedals Towards Raising Awareness

At 8:00am on September 25th, 2015, two teams riding for ALS Crowd started the long road to St. George in the race Salt to Saint. Seth Christensen gathered his family and friends together to be part of his ALS Crowd team.

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Salt to Saint starting line.

Salt to Saint is a road biking relay in Utah where riders bike from Salt Lake City to St. George. Teams of eight, four, or (if you’re brave enough) single riders push themselves on this 400+ mile race, divided into 24 legs. It is a non-stop race, so there are riders on the road at all hours of the day and night. Teams develop their own way of doing it, but the goal is to have the best time. Whether you’re in it to win it or not, Salt to Saint is a fun event that brings new challenges and new friendships for the teams who participate.

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Seth and other team members at a transition point after his ride.

The ALS Crowd teams were a successful group with no injuries and no flat tires. By the end of the race, our teams were exhausted and more than ready for showers. Seth Christensen, co-founder of ALS Crowd, had a bike so that he was able to ride. Accompanied by his brother-in- law, Brad Hale was Seth’s co-pilot on this specialty made recumbent tandem bicycle. Our teams worked hard and Seth rode three legs during the race (roughly 50 miles). After 24 legs, 400 miles, and almost 29 hours, the whole team rode through the finish line together. Escorted by a race official, all 16 riders came through with a smile on their face.

It was definitely an emotional finish. Participating in the Salt to Saint race was not only to raise awareness for ALS, but to remind ourselves that we can still do great things despite the challenges we are given in life. Even though there are dificulties, you will be surprised at what you can accomplish.

If you are wondering how our teams did, just know that they did not finish last and that slow and steady wins the race. We are proud of our ALS Crowd teams and the good that they did to bring awareness to ALS. If you want to be part of this race next year, remember to register at salttosaint.com. 

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New Mom with ALS Uses State-of-the-Art Technology to Communicate

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As seen on Shoreline Times

By Sarah Page Kyrcz

MADISON >> Amanda Bernier works very hard, on a daily basis, to keep in touch with her family, friends and acquaintances. For the 31-year-old new mom this is no small feat.

Two weeks after finding out she was pregnant, Amanda Bernier was diagnosed with ALS. She delivered her daughter, Arabella Grace, Nov. 4, 2014, at Yale New Haven Hospital.

She has been chronically her nearly yearlong journey, living with ALS, through Facebook and videos. Many know her through her work as a Madison firefighter.

ALS is a progressive neurodegenerative disease that causes the deterioration of motor neurons. Amanda Bernier has the most aggressive form of ALS.

At present, her eyes and a small part of her jaw are the only parts of her body that move.

“What a lot of people don’t realize is she can fully hear everyone and she can understand everything they’re saying, she can feel everything,” explains her husband, Chris Bernier.

Amanda Bernier is able to communicate thanks to an eye tracker program donated by Team Gleason (Teamgleason.org) that works with her Windows tablet.

doc55ef44776ff465714381501Team Gleason is an organization that “is partnering with leading technology companies to purchase eye tracking portable computers in bulk.”

“A year ago today was the last time I spoke. It was the last time I smelt (smelled). It was the last time I took a breath on my own,” she writes on Aug.21. “A year ago I got my trach and went on a ventilator.”

In a 51-second video, posted on Amanda’s Angels ALS Facebook page, Amanda Bernier shows how she uses the eye tracker technology.

“The speaker is bluetooth as well so I can place it on my chest so the words sound like they are coming from me. The computer tracks my pupils. To select something I just pause for 0.3 seconds,” she explains.

Every hour, either Chris Bernier, a caregiver or a nurse, must move Amanda. The tablet and eye tracker device, mounted on a mobile frame, are moved, also.

“Whatever direction she’s facing that eye tracker device can be positioned and moved to whatever side she’s facing,” says Chris Bernier.

Amanda Bernier explains that this technology is vital in her daily life.

“It’s how I tell my caregivers what I need or if something is wrong with my trach, communicate with my loved ones, use the internet and write letters to Arabella,” she writes on Facebook.

Chris Bernier explains that his wife has become very proficient in the use of the eye tracker.

“She’s pretty quick at it,” says Chris Bernier. “In a sense, it’s like texting, you know, because you’re selecting each word and as that word populates you select it to do it automatically. The only difference is that she’s typing with her eyes.”

While it may take her a little longer for Amanda Bernier to type out a message, she is grateful to have this technology.

“My eyes dont tire. They get blurry since I cant close my eyes all the way and then it cant track my eyes well,” she writes in a message to the ShoreLine Times.

“I correct that by wiping my eyes and eye drops. I can type at about the same speed as typing with one finger since I can only type one letter at a time.

Chris Bernier appreciates being able to communicate with his wife, and says that without the eye tracker device it would be impossible to know what she is thinking or feeling.

“There’s no doubt that without having this piece of technology we would not know the level or the depth of her thoughts, feelings and needs and wants,” says Chris Bernier.

Amanda Bernier agrees.

“I can’t even imagine what life would be like if I had no way to communicate.”