Team Challenge ALS Climbs to Defeat ALS

An amazing group of people came together for Climb to Defeat ALS earlier this month. The first Team Challenge ALS team summited Mt. Elbert in Colorado on September 7 and has raised over $65,000 for The ALS Association, so far.

We asked a few team members to tell us about their experiences.

Continue reading Team Challenge ALS Climbs to Defeat ALS

Guest Post: We Don’t Have Five Months to Wait

By Mary Johnson, Caregiver – Western Pennsylvania

Note: Under current law, people disabled with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI benefits. Every person must wait, regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

The five-month waiting period for Social Security Disability Insurance (SSDI) after an ALS diagnosis has severely impacted my family and I’m mad as hell about it. There’s absolutely no reason people with ALS shouldn’t be getting both SSDI and Medicare benefits immediately.

I can tell you from my own experience – we don’t have five months to wait.

My family has the genetic form of ALS (familial ALS). As of June 2018, I’ve lost 14 family members — siblings, aunts and uncles, nieces and nephews, and cousins – to this horrific disease.

My 25-year-old niece, Amanda, died four months after her ALS diagnosis – before the SSDI waiting period was met. The same situation occurred for my niece, Shannon, who died at age 34. She was diagnosed in January 2013 and died just two months later.

Continue reading Guest Post: We Don’t Have Five Months to Wait

ALS Takes Away a Person’s Livelihood

In New Video, People With ALS Talk About Losing Jobs to the Disease

This weekend, people across the country will pause to reflect on and celebrate the economic and social value of American workers. And on Monday, many of them will enjoy a paid holiday off from work.

As we light the grills to enjoy a long Labor Day weekend and enjoy a break from some of the doldrums of work – the long commutes, the looming deadlines, and the stress and monotony – there are many people who want to work but are unable to do so.

One of the first things ALS often takes away is a person’s ability earn a living. In this new video, people living with ALS, along with their caregivers and friends, talk about the impact ALS has on the ability to work.

Please watch and share this video with your friends and family and encourage them to join the fight for a world without ALS.

Continue reading ALS Takes Away a Person’s Livelihood

Noel LeVasseur: ‘I’m Here to Do Good For This’

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, dollar raised, piece of legislation passed, mile walked, and auction bid placed – it all adds up!

Noel LeVasseur thought he was dealing with the aches and pains that come after years of holding down a physically demanding job – maybe carpal tunnel or arthritis.

“Then finally we got the diagnosis that our world was going to change quickly,” he said.

In November 2017, Noel was diagnosed with ALS.

Noel said the diagnosis wasn’t a “woe is me” moment because he and his family sensed what was happening. Instead, he said, it was time to move to the next stage in life and come up with a new plan.

Noel married his wife, Jen, just two years ago. He’s the father of two daughters, Morgan and Madison, and the stepfather of Jen’s two sons. He likens his blended family as one boy and one girl away from the Brady Bunch.

Noel talked to us about the new life plan – about the bad and the good days, the challenge of brushing his teeth some mornings, and the beer fests, concerts, and ballgames in his future.

Watch this video featuring Noel and Jen then share their story with your friends and family to help raise awareness of ALS. Continue reading Noel LeVasseur: ‘I’m Here to Do Good For This’

Guest Post: Let’s Stand Together and Keep the Momentum Flowing

By Carol Morgan Shaw

Note: Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, dollar raised, piece of legislation passed, mile walked, and auction bid placed – it all adds up!

My dad, Richard (Dick) Eldred Morgan, liked to say that he’d never been sick a day in his life.

He was born in Binghamton, New York, in October 1921, the second son for Edith and Lee. His older brother, James, was able to go to college, but the family budget couldn’t stretch any further, so my dad worked after high school and added his wages to the family kitty.

When World War II began, he enlisted in the Army Air Corps and became a pilot, flying B-24 bombers over the Philippines. During a training break, two hometown families decided to play matchmaker. They introduced my dad to a young lady from Utica, New York, Ruth Hemstrought. It was love at first sight.

Continue reading Guest Post: Let’s Stand Together and Keep the Momentum Flowing

Kids Inspire Us to Fight ALS

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and dollar raised – it all adds up!

ALS affects everyone in the family – even kids.

In a new video, real families talk about the impact that a loved one having ALS has on young people – how the disease can be scary and confusing for them and how kids can inspire us all to keep fighting. Watch it and share with your friends and family.

Continue reading Kids Inspire Us to Fight ALS

PopSockets and The ALS Association: A Unique Connection

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.

The funds will go directly toward supporting research into treatments and a cure for ALS, plus care services and advocacy for people living with the disease.

What we haven’t shared is the special connection between PopSockets and The ALS Association.

Continue reading PopSockets and The ALS Association: A Unique Connection