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Nineteen years ago I lost my mom to ALS. Five years ago I lost my brother Rich to ALS. Six days ago I lost my brother Bob to ALS. That makes my family part of the very unlucky 10% of all ALS cases. Those that are hereditary. An incredibly sad and frightening fact of life. But it also means something else.

It means 90% of all ALS cases are totally random. Random. That means it could happen to anyone, at any time. Including you, or a friend, or someone YOU love. It’s time to end ALS — for everyone’s sake.

What’s In Your Bucket?

It’s now August. Time for the 2015 Ice Bucket Challenge. This year it doesn’t matter what you pour over your head. Be creative! It just matters that you participatedonate, and continue the challenge to raise ALS awareness. So many lives depend on it. Maybe one day even yours.

The Mackney Warriors ALS Fundraising Campaign

Please help us end ALS by donating here to ALS TDI today and furthering ALS research.

On behalf of the entire Mackney family — and every person touched by the devastation of ALS — thank you!

#endALS #themackneywarriors #icebucketchallenge #EveryAugustUntilACure

DNA Damage in ALS

October 19, 2013

BY AMY MADSEN ON WED, 2013-10-16 05:00

An MDA-supported team of researchers has linked ALS-causing mutations in the FUS gene to impaired DNA repair — a known cause of neurodegeneration.

A failure to repair damaged DNA appears to play an important role in amyotrophic lateral sclerosis (ALS), an MDA-supported team of researchers reports.

DNA, the molecule that encodes the “genetic blueprint” for life, often sustains damage, but various mechanisms employed by the cell typically repair it right away. When the cell’s DNA repair capabilities are impaired, however, it leads to the progressive loss of structure or function of nerve cells (neurodegeneration) that is seen in ALS and other diseases with neurological components.

Li-Huei Tsai at the Massachusetts Institute of Technology in Cambridge, Mass., and colleagues, showed that ALS-causing mutations in the FUS gene impair the DNA damage response in motor neurons, the muscle-controlling nerve cells that die in ALS.

The findings link DNA damage with ALS and suggest that therapies designed to boost the DNA repair process in motor neurons may be effective treatments for the disease.

Click here for the entire article.

Eddie Vedder

Eddie Vedder

As Steve Gleason battles ALS, he shares his unique bond with the iconic band Pearl Jam. The band gave the former Saint a revealing interview opportunity based on Steve’s friendship with guitarist, Mike McCready.

Click here to watch Steve’s inspiring video with the band.

Steve Gleason

Steve Gleason

It was seven years ago this month that Steve Gleason achieved immortality among New Orleans Saints fans when he blocked a punt in the team’s first game in the Superdome following Hurricane Katrina. But it was two years ago this month that Gleason inspired people far beyond the gridiron when he revealed he is living with amyotrophic lateral sclerosis (ALS).

On the eve of Gleason Gras, his annual event to raise awareness of ALS and support the Gleason Family Trust, Gleason agreed to an email interview. He answered Gambit’s questions with the use of assistive technology that allows him to type using his eyes.

Click here for the interview questions and Steve’s answers.

In Part 3 of CNN anchor Suzanne Malveaux’s special series, Augie Nieto, diagnosed with disease 8 years ago, uses his toes to communicate and writes books. Augie’s Quest is a force to be reckoned with!

Click here to view the video.

In Part 2 of CNN anchor Suzanne Malveaux’s special series, former NFL star Steve Gleason battles ALS with the help of technology.

Click here to view the video.

CNN anchor Suzanne Malveaux shares her personal connection to ALS in Part 1 of her special series.

Click here to view the video.

CNN anchor Suzanne Malveaux will focus on ALS with a one-time series reporting on three unique faces of ALS and how their families are coping. With the help of Dr. Sanjay Gupta this series will tap into the medical resources as well as the research of the disease.

The series will air on CNN Newsroom July 23rd, 25th and 26th at 1pm.

Click here for the complete article.

ABC News’ Rich McHugh reports:

Steve Gleason is a hero in New Orleans.

The former safety for the New Orleans Saints’ earned that status when he blocked a punt by Atlanta Falcons’ Michael Koenen as the teams played in the Superdome in 2006. The team went on to win the game. It was the Saints’ first victory since the devastation of Hurricane Katrina the previous year, and the win raised the spirits of people in the city.

That game – and the symbolic turning point in the city’s spirits – was immortalized with a statue in Gleason’s likeness outside the Superdome. The statue was named “rebirth.”

That symbol of resilience holds special meaning for New Orleans now that he’s battling amyotrophic lateral sclerosis (ALS), a severe neurodegenerative disorder also known as Lou Gehrig’s disease.

Click here for the entire story and inspiring video.

A Picture’s Worth…

April 17, 2013

How do you determine the value of a photograph? It’s a question photographers deal with every day when pricing their prints and services. On this day, however, I see the question very differently.

Today…

Three years ago today I lost my brother Rich to ALS, better known as Lou Gehrig’s disease. Not a day goes by that I don’t think of him.

When The Past Becomes A Present

Sometimes — even for a photographer — our most valuable photos aren’t the prints that have sold the most, or the ones that have won awards or been featured in magazines. Instead, they are captured moments destined to mean so much more. Like a 12-year old big brother sharing his 7-year old sister’s delight as she falls in love with a baby goat at the Catskill Game Farm. How I loved that day — and that Rich was part of it.

Brother and sister at the Catskill Game Farm in 1965.

Catskill Game Farm, 1965

Looking Back…

I look at that photo now and all of the wonderful feelings from that day come flooding back. It was such a fun time. I look at Rich’s face and see the kindness that followed him into adulthood. I look at a very young me in jeans and a red jacket sitting in the dirt with a smile on my face and see the first signs of the photographer I would later become.

I look at both of us together and see innocence, happiness and pure joy. More than anything else, I see a captured moment in time that now means the world to me. Much more than either one of us ever could have possibly imagined.

So with a bittersweet smile, I can easily tell you the value of this photo…

Priceless.

~ Liz Mackney

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