2015 Ice Bucket Challenge Mackney Header2 Border-1

PLEASE CLICK ON IMAGE

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

Advertisements

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.

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.

 

BALTIMORE (WJZ) — He’s the man the Ravens draw their inspiration from, a portrait of courage and determination. OJ Brigance was part of the Ravens’ Super Bowl team in 2001. Ron Matz reports on OJ’s long journey since then in his fight against Lou Gehrig’s Disease.

oj-briganceOJ Brigance was in the locker room as the Ravens celebrated the AFC Championship. He was a champion with the Baltimore Stallions and then part of the Ravens’ 2001 Super Bowl team. But six years ago, when he was 37, OJ was diagnosed with ALS—an incurable disease.

His wife Chanda, is his rock.

“The Brigance Brigade raises money for patient services. When we were first diagnosed, we learned that just your day to day routine is interrupted. People with ALS need help. They can’t afford equipment and supplies,” Chanda Brigance said.

A computer screen is mounted on his wheelchair. His eyes choose the keys. The dynavox enables OJ to communicate.

Click here for the entire article.

Double amputee and Marine veteran Josh Wege dives after Newman defensive back Gilly Andry (6) after an interception during the charity flag football game between Team Gleason, made up of former NFL players, and the Wounded Warrior Amputees on the football field at Isidore Newman School on Wednesday, January 30, 2013. (Photo by Michael DeMocker, NOLA.com | The Times-Picayune)

Double amputee and Marine veteran Josh Wege dives after Newman defensive back Gilly Andry (6) after an interception during the charity flag football game between Team Gleason, made up of former NFL players, and the Wounded Warrior Amputees on the football field at Isidore Newman School on Wednesday, January 30, 2013. (Photo by Michael DeMocker, NOLA.com | The Times-Picayune)

Steve Gleason’s slogan for ALS awareness is “No White Flags.” That was apparent on Wednesday night when it seemed like every color of human being under the rainbow gathered at Newman School’s football field to watch a charity flag football game in support of ALS awareness.

There were a host of largely immobilized ALS-afflicted folks on the field’s sideline in wheelchairs. “Kick ALS” was a sticker on one chair — “ALS sucks!” buttons on another– words that needed no physical voice.

New Orleans Saints football players towered over the ecelectic sideline crowd – guys like Zach Strief and Lance Moore.

Click here for the entire article.

%d bloggers like this: