Race Across America to Beat ALS

Single Cyclist, 3000 miles, One and a Half Weeks . . . All for ALS!

DONATE: Race Across America to Beat ALS

Beginning on June 14, 2016 Mike Conti is using the Race Across America (RAAM), a 3000 mile bike race, as a symbol of the fight to end ALS. Unlike other bike stage races, RAAM is one continual race; once the clock starts it does not stop until the finish line.  Mike is the 2015 winner of the Race Across the West (RAW), an 880-mile bike race, and the first cyclist to solo ride from Salt Lake to Las Vegas in less than 36 hours.

Conti has teamed up with ALS Crowd—a non-profit organization that brings patients and doctors together to better understand and cure ALS. According to Seth Christensen, an ALS diagnosee and Co-Founder of ALS Crowd: “The Race Across America, like ALS, will require a Herculean effort to ‘finish’. We need focus. We need power. Mike’s ride, for me, embodies the ALS struggle and my own physical struggle … Until I no longer need my wheelchair, Mike is my legs.”

Conti adds: “I race for Seth and all those impacted by ALS…all my suffering isn’t even close to the suffering diagnosees and their families go through each day knowing they have a healthy mind, a failing body and, ultimately, a death sentence”.

ALS Crowd is a division of the CrowdCare Foundation, an organization founded by technologists and entrepreneurs who have been diagnosed with ALS or other rare terminal illnesses. Because its founders are nationally recognized within their disease communities, deeply motivated, and completely unpaid, the Foundation is able to use 100% of donated funds to drive collaboration within and across multiple illnesses, and to directly develop technologies that will end ALS and other diseases.
Mike and Seth both rely on a team of friends and family to help them on their Journey. Please join them as they raise both money and awareness for ALS by donating here and going to ALScrowd.org

Track Mike Conti’s progress herehttp://raceacrossamerica.org/live-tracking.html

Adaptive Ski Day


The National Ability Center in Park City, Utah is a place where many people have their best day ever.  This center is a global leader for adaptive recreation, serving individuals with a wide range of disabilities.  The National Ability Center empowers individuals of all abilities by building self-esteem, confidence and lifetime skills through sport, recreation and educational programs.

Amy Christensen appreciates that the National Ability Center also focuses on having families do activities together. Last winter she taught her youngest son to ski.  This opened the possibility for Amy to ski with all four of her children.  But her eight year old daughter wanted her dad to ski with them too.  She had seen someone at the ski resort skiing in an adaptive ski chair and had said, “My dad could do that.”  

Seth Christensen had been diagnosed with ALS, or Lou-Gehrig’s disease,  when his two youngest children were 8 months and 3 years old.  Four years later his legs weren’t strong enough to ski anymore.  He hadn’t ever skied with his whole family, so he couldn’t say no when his daughter asked.

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The National Ability Center gave a scholarship for Seth to use their equipment and ski for the day with his family.  At the end of their ski day together, Seth and Amy’s youngest son climbed up into Seth’s lap and said, “Wasn’t that the best day ever Dad?!”

And that is what it’s all about.

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The National Ability Center can specifically serve individuals based on their abilities and limitations.  Because of its ideal location within minutes of Park City’s three ski resorts in the winter, and two lakes and miles of outdoor trails in the summer, participants and their families can register for the following activities:

  • Alpine Skiing
  • Nordic Skiing
  • Snowboarding
  • Aquatics
  • Archery
  • Biathlon
  • Challenge Course
  • Cycling
  • Horseback Riding & Therapy
  • Rock Climbing
  • Sled Hockey
  • Water Sports


Since 1985, the National Ability Center has grown to serve more than 3,000 participants annually through over 18,000 adaptive recreation experiences. They are able to serve individuals with a wide range of disabilities, including orthopedic, spinal cord, neuromuscular, visual and hearing impairments, as well as cognitive, emotional and developmental disabilities. Participants come from all socioeconomic backgrounds and range in age from young children to senior citizens.

For more information about the National Ability Center, see their website: http://www.discovernac.org

To ALS Patients: Put on Some Pounds

Most patients with ALS are encouraged to gradually gain weight.  Yes, you read that right.  It is important to prevent weight loss which could cause further muscle breakdown.  Weight gain is recommended at a gradual pace, about 1-2 pounds gained per month until Body Mass Index (BMI) is in the 25-30 range.  For a six foot tall 40 year old male, that would mean he would want to gain until he reaches about 220 pounds and then try to maintain that weight. 

BMI is calculated by height, weight, and age and can be done easily with an online tool like smartbmicalculator.com.  

For a person with ALS, there are many variables that affect how many calories they need each day.  Muscle fasciculations can burn more calories than another person at rest.  However, over time, decreased physical activity can mean less calories needed.  Difficulty swallowing can also cause patients to not get enough for their needs.

Food needs will change over time.  It is important to re-evaluate how many calories are needed and make sure that those needs can be met.  If a person with ALS is not eating enough calories to meet their needs, the body will begin to breakdown fat and muscle tissues, which is the last thing an ALS patient wants.

Here are some tips and tricks to maximize eating for ALS patients who can still swallow fairly well:

  • Eat small frequent meals
  • Drink some of your calories (juice, smoothies, whole milk, or soymilk)
  • Eat softer foods
  • Nap before meals so you’re not too tired to eat
  • Eat lots of calories during the earlier part of the day if you tend to get too tired to eat later in the day
  • Limit foods that take a lot of energy to chew (steak, salad, celery)
  • Don’t fill up on low-calorie drinks like water, tea, and coffee
  • Eat foods from all food groups, try to keep a good balance
  • Avoid diet versions of foods, choose original full fat foods instead
  • Increase portion sizes 

It is important to realize that it is just as difficult for a thin person to gain weight as a heavy person to lose weight.  It will take work and consistent effort to see a gradual healthy change.  Here are some calorie rich foods recommended for weight gain.  Many of these can be added onto regular foods, for example, add nut butter into your cereal.  Add guacamole or hummus spread into sandwiches.  Eat what sounds good and experiment with adding more of these:

  • Nuts
  • Seeds
  • Peanut butter
  • Dark chocolate
  • Sesame butter
  • Whole wheat crackers
  • Cheese
  • Eggs
  • Fish
  • Meat
  • Raisins
  • Dates
  • Whole wheat bread
  • Dried apricots
  • Coconut milk
  • Avocados
  • Brown rice
  • Oatmeal
  • 100% fruit juices: grape, pineapple, apple, orange

When calorie needs cannot be met any longer with regular food by mouth, it is recommended to use a feeding tube to supplement calories.  This difficult milestone is a topic for another day, but important to maintain weight for a person with ALS.

To view a one hour NEALS Nutritional Intervention webinar from March 4, 2016, go to this link: https://vimeo.com/157773402 presented by 

Edward J. Kasarskis, M.D., Ph.D.

Anne-Marie A Willis, M.D., M.P.H.

Jane L. Hubbard, M.S., R.D., L.D.N

ALS Brings Us Together, But We Make Our Own Stories

ALS dignosees group pic (640x427)

I’ve been firmly on the fence about whether or not to see The Theory of Everything (the movie on the life of Stephen Hawking).  I was worried that this film might strike a little too close to home, or, worried that it might not strike close enough to home, until today when Amy and I had lunch with three other ALS diagnosees.  I was reminded that, though we share a diagnosis, we are all having our own completely unique experience. I realized that I have nothing to fear from anyone else’s story–no one’s story is MY story.

I value these dear friends who are going through an amazingly deep trial and doing so with grace that I am personally inspired by.  We have banded together; a group that may not have otherwise come together.  It’s a club that we are a part of but wouldn’t choose for anyone.  Our ALS diagnosis is our commonality, but we each have different strengths and stories.  We can laugh, and cry and lean on each other.  

So, I came home excited to see The Theory of Everything.  I rented the movie online, and watched it all by myself. I liked this movie. It did better than most at showing the complexity of a trial. It also touched on many of the topics I find myself thinking about every day: God, time, and family.

I am convinced through my own experience that we really have no idea what others are experiencing at any given moment.  We assume, but don’t really have the ability to be in someone’s head or emotions, or fears or relief.  Some of what we assume about each other is just plain wrong. I’ve been caught off guard more than once when someone comes up to me in tears, assuming I am suffering and wanting to comfort me, and I think to myself, “Man, what can I tell this person? Thank you? That I haven’t struggled with what they assume I am struggling with for years? That I think their struggles are comparable to mine? That, in reality, I’m quite content, or hungry, or in the mood to be distracted?”

Sometimes, when I am tired, I simply don’t want to receive any more empathy.  I don’t want to comfort anyone who is suffering on my behalf.  I don’t want to be the false high-standard for anyone’s faith or anyone’s inspiration. And then there are the times when I feel like light pours in and I am able to go give and receive, to see the smallness of my fears, and the beauty of the empathy offered me.

Thoughts from Feb 2015,  by Seth Christensen

Gleason’s ALS Film will Change Lives

Steve Gleason, wife Michel, and son Rivers star in "Gleason."

Steve Gleason, wife Michel, and son Rivers star in “Gleason.”

Former NFL football player Steve Gleason was diagnosed with ALS at age 34, and within weeks found out his wife was pregnant with their first child.  He started making a video blog of himself.  

This is intended to be a gift for you, my child who I have not yet met.  My intention is to pass on as much of who I am as I possibly can, to you,” says Steve in his first entry.  The movie follows him over a four year period.

Seth Christensen is another ALS patient, and founder of ALS Crowd Foundation.  He was 35 years old when he was diagnosed with ALS, and had four children ages 10, 7, 3, and 6 months.  He knows the paralyzing fear that comes with such a serious diagnosis, and the emotions and worries for his family.  ALS is a disease that progressively degenerates nerve cells that control all muscle movement.  Most patients are told they have 3-5 years to live.  

Seth recently attended the premier of “Gleason” at the Sundance film festival in Park City, UT.  The full length documentary shows very personal moments in Steve Gleason’s daily struggles with his declining physical body, his desire to get his relationships in order, and his attempts to be the best father he can possible be.  

“It was very surreal; the feeling that I was actually watching myself,” says Seth.  “It felt powerful to see that someone else could relate.  I’m sure a lot of people can relate.  I think we all struggle.  But to see someone like me, that was powerful!”

Gleason took that to heart that he needed to live life as fully as one possibly can.  Seth agrees that it has made his family live very differently. He doesn’t take time for granted, but instead chooses to live intentionally.

Seth and Michel exchange their favorite lines from the movie.

Seth and Michel exchange their favorite lines from the movie.

The film also explored the complex challenge for a caregiver to balance the rest of their life.  In Steve Gleason’s case, it is his wife Michel, who is adjusting to her new life of motherhood.  She was clear that she was not trying to be known as a saint.  She was just doing what needs to be done for her family.  In Seth’s case, he sees his wife Amy going through those same challenges.  

“It really shows how complex something like this can be on relationships, faith, and money.  Even the things that Amy and I fight about, they fought about.The emotions were spot on,” says Seth.

The theatrical rights to “Gleason” were purchased by Amazon Studios.  The film will be  co-released in theatres with Open Road Films, although a release date has not been announced.

Christensen hopes this film will be the catalyst for the community to finally come together and work on that shared vision of a cure for ALS.  He believes it will be the second biggest thing that has ever happened to the ALS community; second only to the ice-bucket challenge that swept social media and provided a boost to fundraising in 2014.  

“This film is really beautifully done,” says Seth Christensen.  “It will change lives.”

Seth thanks director Clay Tweel for such an insightful documentary.

Seth thanks director Clay Tweel for such an insightful documentary.



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.


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.


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. 




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


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.”

Salt to Saint Racers Support ALS Crowd

SaltToSaintRelay11The Salt To Saint Relay is Utah’s most exciting bicycle relay challenge. Teams of cyclists, consisting of 8 riders, 4 riders, and even Solo riders, will push themselves, their sleeping habits, their cycling abilities and their idea of a good time to new limits. Teams will ride, using their own strategies, from Salt Lake City to St. George, Utah as fast as possible. Following historic Highway 89 for the majority of the route, riders will pass through some of the most stunning scenery Utah has to offer. The entire race is a distance of +400 miles, divided into 24 legs. Each team can split the distance as they see fit based on their team’s abilities.

STS-2014-323-450x450Salt to Saint Racers are now supporting the ALS Crowd. Racers can donate to the ALS Crowd through the Salt to Saint donation page. If you are riding or want to ride and support ALS Crowd, join them as they race to the south for this annual and spectacular fall event held on September 25-26, 2015. 

If you’d like to join the Salt to Saint Relay, click here to register. To donate to ALS Crowd as a Salt to Saint rider or supporter, click here. 

The “Right to Try”

When presented with life or death options, people will try just about anything. That is the basic idea behind the “Right To Try” Act, a movement that is now becoming law in states all over the country. This law gives patients with terminal diseases the option to use medication or treatments that aren’t passed by the FDA. This essentially bypasses the FDA’s trial program which can cost around $1 billion and take up to 10 years.

Advocates for the “Right to Try” argue that if we don’t give these patients the option to try experimental treatments, then we are taking away their chance of extending life span. Advocates also argue that patients should be able to do what they wish with their own bodies and lives. Furthermore, giving treatments to patients could provide a valuable research opportunity for clinics and companies.

David Huntley, a former collegiate geology professor, is a supporter of the “Right to Try” Act. Diagnosed with ALS in June of 2013, he has lost use of his arms, and has difficulty speaking due to the loss of use in his lips. Huntley and other ALS patients are frustrated with the absence of choice in determining his future. Huntley said, “It’s frustrating to deny access of a drug to a population afflicted with a rapidly progressing disease that is 100 percent fatal.”

In contrast, there are others who believe that the “Right to Try” is a step in the wrong direction. These critics argue that the experimental medication could be doing much more harm than good. These critics also worry that these laws would undermine the authority of the FDA. They also realize that the companies don’t have to supply these medications to patients. Producing, creating and manufacturing drugs and treatments is as very expensive process.  As a result, drug companies may be unlikely to provide experimental treatments to individuals with a progressive form of ALS.

The “Right to Try” Act will allow more patients and companies access to potentially lifesaving medicine and could be a giant leap forward in the ALS community. However, these new drugs could be taking away precious time from ALS patients and their families. This controversial law is in effect in a few states across the country, and is being advocated in many more.

To get more information about the “Right to Try” visit http://www.yourrighttotry.com/


A Last Wish Fulfilled

Rembrandt is considered as one of the greatest Dutch painter ever. His Renaissance paintings have inspired generations and will inspire generations to come.

Many hope to see these famous paintings sometime in their life. An unnamed patient wanted to see the Rembrandt paintings, but ALS was a seemingly impassable barrier that couldn’t be broken. The museum was often crowded, and wheeling in a hospitalized patient wasn’t an option.

Kees Veldboer, a former ambulance driver, formed the Ambulance Wish Foundation. When the Dutch charity heard about this woman’s last wish, they decided to fund the venture.

After arranging with the museum, a special audience after hours was arranged. The woman was brought into her own private viewing to fulfill her wish. Along with three other terminally ill patients, they enjoyed the legendary paintings for the last time.