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Embracing Fear In The Face Of Death

Jay Smith | Posted 08.30.2016 | GPS for the Soul
Jay Smith

"Dad, I'm afraid you're going to die," my 6-year-old said as she cuddled up to me in bed one afternoon. "I don't mean like die when you're old, I know...

As An ALS Patient, Here's What It Costs Me To Stay Alive

Jay Smith | Posted 07.27.2016 | Politics
Jay Smith

When I was diagnosed with ALS, I was given two years to live. Two and a half years later here I am typing this article using my eyes, while being fed through a tube in my stomach and wearing a breathing mask to give my diaphragm a break. I am one of the lucky ones, and I'm thankful for that.

Please Don't Take My Funny

Kevin Swan | Posted 06.22.2016 | Impact
Kevin Swan

The list of elements of daily living that ALS tenaciously takes away is never-ending. There's the big stuff like walking or use of your arms, the dete...

Partnerships Play a Key Role in the Battle Against Brain Diseases

Howard Fillit, MD | Posted 06.06.2016 | Impact
Howard Fillit, MD

When the Lauder family founded the Alzheimer's Drug Discovery Foundation (ADDF) in 1998, they knew that proprietary boundaries would only limit effort...

Bourbon Master Distiller Fights ALS

Fred Minnick | Posted 06.02.2016 | Taste
Fred Minnick

When Parker publicly announced his illness in 2013, it sent ripples of sadness to the whiskey community. Many distillers, writers and fans have since raised money and awareness in honor of Parker, who is so revered and loved that we often cannot hold back the tears when discussing his plight.

How I Happily Became a Junkie Again

Kevin Swan | Posted 05.27.2016 | Impact
Kevin Swan

Before last Christmas, I would look around any room full of people and notice one thing they all had in common. And I mean from my living room to a cr...

My ALS by the Numbers

Kevin Swan | Posted 05.24.2016 | Impact
Kevin Swan

20 - It takes approximately 20 minutes for me to get out of bed every morning. I know what you're thinking, "Me too, after I hit snooze a couple of ti...

How a Service Dog Saved My Life

Stuart Sherman | Posted 04.05.2016 | Healthy Living
Stuart Sherman

Today, Swanson is my companion who looks to me for direction and who gets excited when she completes tasks. She infuses my heart with gratitude and her energy is contagious.

10 Things You Should Know When Traveling With a Wheelchair

Jay Smith | Posted 04.05.2016 | Impact
Jay Smith

Traveling with a paralyzing, terminal illness is not for the faint of heart. Here are 10 things you should know if you want to defy (or just completely ignore) the limitations of your disability.

"If I Die I Have no Control": Jay Smith on ALS

Carol Smaldino | Posted 03.22.2016 | Impact
Carol Smaldino

This may seem like a title that is overly obvious: of course when we die we lose control. However there are things we have a say over, as in what we leave behind and who gets to share in it.

We Know How This Ends

Maureen Anderson | Posted 03.18.2016 | Books
Maureen Anderson

When Bruce Kramer asked Emmy-award winning Minnesota Public Radio host Cathy Wurzer whether she'd follow his journey toward the end of his life, she hesitated -- then said yes. It was a decision that was life changing for both.

Man With ALS Wants to Be Turned into a Robot

Jay Smith | Posted 02.25.2016 | Impact
Jay Smith

In 2014, 36 year-old Austin, Texas man was given less than two years to live. He was diagnosed with Amyotrophic Lateral Sclerosis, commonly referred to as Lou Gehrig's Disease. Now confined to a wheelchair, unable to walk, eat, use his arms, or speak, he is making a public plea to be turned into a robot.

Chat for a cure: How Viber merges mobile messaging and community in support of ALS

Valeh Nazemoff | Posted 10.02.2016 | Business
Valeh Nazemoff

Did you take the ice bucket challenge to support ALS? If so, you found out that a bucket of cold water can hurt so good! At the height of ice bucket ...

Man Diagnosed With ALS Dies of Lyme Disease (Part 1 of 2)

David Michael Conner | Posted 01.11.2016 | Healthy Living
David Michael Conner

Tara and David Geraghty On Dec. 22, three days before Christmas, 55-year-old David A. Geraghty died from complications of a supposedly rarely fatal i...

Branded Content: The Currency of Connection

Tom Doctoroff | Posted 01.10.2016 | Business
Tom Doctoroff

The rise of "content" is a fundamental 21st century marketing phenomenon. But is "advertising," deliberate messages broadcast at one time to swathes of people, dead?

Man Dies From Lyme Disease: 'No One Wants to Talk About It'

David Michael Conner | Posted 01.08.2016 | Healthy Living
David Michael Conner

Strict adherence to prescribed regulations that don't take into consideration variable and nuanced real-world factors that don't always fit neatly into diagnostic criteria? Or is there something about Lyme disease specifically, as Tara Geraghty said, that no one wants to talk about?

What It's Like to Lose Your Ability to Speak

Amanda Gutterman | Posted 12.16.2015 | Impact
Amanda Gutterman

For me and my mother, watching fall slip quietly once again into winter, we're both reminded that something is missing. That something is my dad, who died around the holidays in 2007 after a long fight with ALS.

Q&A: A Public Radio Journalist on Writing a Book With a Dying Man

The National Book Review | Posted 12.10.2015 | Books
The National Book Review

This is much more than a memoir. It is an unexpected view inside a terminal disease. Bruce's is a path all of us will have to take.

Political Commitment of Our Next President Needed to Help our Children

Ray Flynn | Posted 12.10.2015 | Politics
Ray Flynn

Recently, I attended a hugely successful Legends Gala dinner in Wrentham, Massachusetts-sponsored by the Hockomock Area YMCA and supported by the New ...

The Cost of ALS Is Killing Us, and Our Vets

Jay Smith | Posted 11.19.2015 | Politics
Jay Smith

ALS is a very expensive disease, costing patients an estimated $300,000 a year. The average life expectancy for someone with ALS is 18 months. We wouldn't leave a soldier with a battle wound sitting around waiting to see a doctor for 16 months. So why are we now?

Amazing Race Ain't Got Nothing on ALS

Kevin Swan | Posted 10.13.2016 | Impact
Kevin Swan

The pope, the president and I walk into a bar. Ok, it didn't go exactly like that but you get the idea. A couple weeks ago we had our foundation's fourth annual culinary spectacular at Hearth restaurant in New York City.

The Cubs Are Doing What Modern Medicine Isn't

Kevin Swan | Posted 09.24.2016 | Impact
Kevin Swan

This year the Cubs and my ALS have had a lot to do with each other. Baseball is an eternity of a season (ask my girlfriend Elizabeth who has uttered "They play again tonight") that lasts a 162 games in a 188 days. It is a true war of attrition. A lot like ALS.

NYC's Top Chefs Prepare the Ultimate Family Dinner

Kevin Swan | Posted 09.21.2016 | Impact
Kevin Swan

This year's event will have an extra special amount of love and support. In the three previous years, my co-host has been the NYC great, Chef Gerry Hayden who was fighting the same disease. Not only was he a brother in arms, his beautiful and talented wife is Chef Claudia Flemming, the evening's pastry chef.

Mom With ALS Shares Incredible Breastfeeding Story In Viral Post

The Huffington Post | Caroline Bologna | Posted 09.11.2015 | Parents

Just two weeks after learning she was pregnant, Amanda Bernier received a heartbreaking diagnosis: amyotrophic lateral sclerosis, or ALS. After 24 we...

Neurological Diseases vs. the California Stem Cell Agency: Disease-a-Week Challenge #16

Don C. Reed | Posted 09.04.2016 | Science
Don C. Reed

First, a seeming digression from the subject of chronic illness. In my youth, I worked as an aquarium diver for Marine World Africa USA in Redwood Ci...