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

With ALS, Every Day Adds Up

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!

For people living with ALS and their caregivers and family, every day adds up.

ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.

It’s a journey that, for many people diagnosed with ALS, continues through the five-month waiting period they qualify for Social Security Disability Insurance.

Continue reading With ALS, Every Day Adds Up

ALS Researcher Living With ALS Continues to Work Toward a Cure

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!

Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.

Dr. Desikan entered the research and medical field at Boston University in Massachusetts, obtaining both his M.D. and Ph.D. He then completed his diagnostic radiology residency at University of California, San Diego (UCSD) before moving on to University of California, San Francisco (UCSF) for his neuroradiology fellowship.

In the fall of 2016, after years of hard work, he was offered an assistant professorship, along with his own research lab, at UCSF.

Continue reading ALS Researcher Living With ALS Continues to Work Toward a Cure

Sunny Brous Erasmus: ‘As Long as We’re Here, We’re in This Together’

Sunny Brous Erasmus is a wife, daughter, “dog mama,” sister, aunt, and friend. She’s like her name – strong, full of life, and a very bright light.

Her mantra is “no apologies, no excuses, no regrets,” which helps explain why she considers Dr. Miranda Bailey (“Grey’s Anatomy”), kind of bossy and always in-charge, her soul sister.

Continue reading Sunny Brous Erasmus: ‘As Long as We’re Here, We’re in This Together’