Amyotrophic lateral sclerosis hasn’t had this much attention since baseball legend Lou Gehrig died of the disease in 1941.
The Ice Bucket Challenge to raise money to fight ALS has dominated social media since July. Videos of the frigid baths have popped up everywhere.
The challenge also has raised a whopping $88.5 million in donations nationally as of Tuesday — compared to $2.6 million during the same time period last year.
ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. There is no cure.
People with ALS lose the ability to initiate and control muscle movement, which often leads to paralysis and death within two to five years of diagnosis.
Up to 30,000 Americans have the disease, and an estimated 600 Georgians, including former Murray County High School football coach Bill Napier. (Here’s an article from the Dalton Daily Citizen on Napier’s condition.)
It’s clear the challenge has raised awareness of ALS, especially among young adults, said Sarah Embro of the ALS Association of Georgia.
The general rules are that whenever a person accepts the challenge – and pours a bucket of ice water over his or her head – the person also agrees to donate at least $10 to ALS research. If the person doesn’t accept the challenge, he or she has to donate at least $100 for research.
In Georgia, ice water has showered plenty of participants, including Atlanta Falcons quarterback Matt Ryan and coach Mike Smith.
Fifty students at the Mercer University School of Medicine in Macon recently took the plunge, then challenged Georgia’s other med schools to join in the effort.
Funding surge comes at welcome time
Embro of the ALS Association’s Georgia chapter said Tuesday that donations will go to research, patient referral services and advocacy.
Embro added that Emory University and Georgia Regents University are conducting research into treatment and a potential cure.
The Augusta Chronicle reported that GRU President Ricardo Azziz got doused Friday, then issued his own challenge to Augusta Mayor-elect Hardie Davis, among others, to get iced down within 24 hours or donate to the ALS clinic at Georgia Regents Medical Center or both, as Azziz did.
The donations couldn’t come at a better time. The Washington Post recently noted that the National Institutes of Health expects to spend $40 million on ALS research this year, which is down from $59 million in the 2010 fiscal year.
“Every day, given this dramatic increase in funding [thanks to the challenge effort], the scope of what’s possible when it comes to fighting this disease has changed and continues to change,” Barbara Newhouse, president and CEO of the ALS Association, said in a statement.
“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 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 Atlanta Walk to Defeat ALS is Saturday, Sept. 13, at the Georgia World Congress Center plaza downtown.