Braille Works ALS Ice Bucket Challenge

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ALS Hits Home for the Braille Works Family

A couple weeks ago when the ALS Ice Bucket Challenge began sweeping across the nation, many of us here at Braille Works didn’t realize how close to home Amyotrophic Lateral Sclerosis really was. Come to find out, the father of our Project Manager Shannon Landrum has been battling ALS for quite some time now.

His name is Carl Macfarlane and he’s one of many United States Veterans who are fighting this disease with the same dignity and courage they displayed while fighting abroad for this country. Carl and his fellow Veterans are several times more likely to be diagnosed with ALS regardless of when or where they served.  Whether you have loved ones who have been diagnosed with ALS or not, please consider making a donation to the ALS Association to help find a cure for these American heroes.

Braille Works ALS Ice Bucket Challenge Donation Webpage

As a company, our owners Lou and Joyce Fioritto accepted the challenge to match all employee contributions dollar for dollar! To make your donation, visit the Braille Works ALS Ice Bucket Challenge webpage or click on the image below. Donate as much as you like; every little bit counts. Thank you in advance for helping support this worthy cause!

Image showing the Braille Works ALS Ice Bucket Challenge donation webpage

What is Amyotrophic Lateral Sclerosis?

ALS is a disease affecting the parts of the nervous system that control voluntary muscle movement. Motor neurons (nerve cells that control muscle cells) are gradually lost and the muscles they control become weak and eventually nonfunctional.

The word “amyotrophic” comes from Greek roots that mean “without nourishment to muscles” and refers to the loss of signals nerve cells normally send to muscle cells. “Lateral” means “to the side” and refers to the location of the damage in the spinal cord. “Sclerosis” means “hardened” and refers to the hardened nature of the spinal cord in advanced ALS.

In the United States, ALS also is called Lou Gehrig’s disease, named after the Yankees baseball player who died of it in 1941. In the United Kingdom and some other parts of the world, ALS is often called motor neurone disease in reference to the cells that are lost in this disorder.

Latest Updates from The ALS Association

August 26th: The ALS Association is Grateful for Outpouring of Support

Ice Bucket Donations Reach $88.5 Million

Washington, D.C. (August 26, 2014) — As of Tuesday, August 26, The ALS Association has received $88.5 million in donations compared to $2.6 million during the same time period last year (July 29 to August 26). These donations have come from existing donors and 1.9 million new donors to The Association, which is incredibly grateful for this tremendous outpouring of support.

ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and only one drug approved by the U.S. Food and Drug Administration that modestly extends survival.

“We are simply awe-struck at the incredible generosity that has poured forth to help fight this disease,” said Barbara Newhouse, President and CEO of The ALS Association. “Words cannot express how grateful we are to the nearly two million people who have donated and even more than that who have likely taken the challenge. You have all made an incredible effort in the fight against this disease.”

Image showing a snapshot of Will Ferrell from the movie Zoolander with the words "ALS Ice Bucket Challenge on Facebook is So Hot Right Now" displayed.

Just one week ago, donations totaled $22.6 million. In just seven days, donations have skyrocketed by an average of $9 million per day, now totaling $88.5 million.

“Every day, given this dramatic increase in funding, the scope of what’s possible when it comes to fighting this disease has changed and continues to change,” Newhouse continued. “Under the leadership of our Board of Trustees, we are putting a decision-making process in place to address how this money will be spent. This is isn’t a matter of spending these dollars quickly—it’s a matter of investing these dollars prudently to achieve maximum impact in our quest to help people living with the disease and those yet to be diagnosed.”

The ALS Association’s mission includes providing care services to assist people with ALS and their families through a network of chapters working in communities across the nation and a global research program focused on the discovery of treatments and eventually a cure for the disease. In addition, The Association’s advocacy efforts empower people to advance public policies in our nation’s Capital that respond to the needs of people with ALS.

Image showing three LEGO figures set up to look like they are doing an ALS Ice Bucket Challenge

“We appreciate the numerous emails and phone calls from people who have very clear ideas as to how this money should be spent. While we don’t yet have a percentage breakdown of how the money will be allocated, I want to assure donors and public that ALS research and care services to people living with ALS are top priorities for The Association,” continued Newhouse.

For inquiries regarding the use of these funds or other information about the Ice Bucket Challenge, please email inquiries@alsa-national.org.

August 29th: The ALS Association Expresses Sincere Gratitude to Over Three Million Donors

Ice Bucket Challenge Donations Top $100 Million in 30 Days

Washington, D.C. (August 29, 2014) — Today, The ALS Association has topped $100 million in donations from people all over the globe who were moved to action by this summer’s Ice Bucket Challenge. As of August 29, the Association has received $100.9 million in donations compared to $2.8 million during the same time period last year (July 29 to August 29).

“The word gratitude doesn’t do enough to express what we are feeling right now,” said Barbara Newhouse, President and CEO. “We recognize a profound sense of urgency and are engaged in discussions about how we’re going to put this money to work in the short term and into the future.”

At a support group this past week run by The ALS Association for people living with the disease in southwest Florida, an attendee asked how much the organization had received in donations. When Patricia Stanco, the Regional Care Manager for The ALS Association Florida Chapter told the group how much had been donated, she described what she witnessed in an email to colleagues on August 28: “Jaws dropped. Tears formed. The group was overwhelmed and for a distinct moment, silent. I realized I was witnessing hope. It was so powerful—I will never forget it.”

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival.

“These funds will be used to fund cutting-edge research as well as care and support to people living with the disease,” said Newhouse. “Now and in the coming weeks, we will be able to enhance our strategic plan, reformulating and recasting strategies with input from stakeholders, including our donors, our chapters, and most importantly, people living with ALS and their families. We want to move quickly but decisively as our ultimate goal is to use this incredible generosity in a way that has the biggest impact on fighting this disease.”

The ALS Association will continue to be transparent by communicating regularly with all audiences as to how the funds will impact the fight against ALS.

The ALS Association has the highest four-star rating from Charity Navigator, is “Top Rated” on Charity Watch, and is a Better Business Bureau accredited charity as well as a Guidestar Exchange gold participant.

The ALS Association’s mission includes providing care services to assist people with ALS and their families through a network of chapters working in communities across the nation and a global research program focused on the discovery of treatments and eventually a cure for the disease. In addition, The Association’s advocacy efforts empower people to advance public policies in our nation’s Capital that respond to the needs of people with ALS.

For inquiries regarding the use of these funds or other information about the Ice Bucket Challenge, please email inquiries@alsa-national.org.

About The ALS Association

The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through Certified Treatment Centers of Excellence, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit their website at www.alsa.org.

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This post was written by Jeff Frcho

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