So you’ve doused yourself with ice water and written a check, but where is your money going?
Tanner Hockensmith with the Texas chapter of the ALS Association says living with ALS is not cheap, and the association helps patients pay for what they need.
“The statistics say the disease could cost a family upwards of $200,000 a year, because ‘quality of life’ equipment is very expensive, so we’re able to subsidize what their insurance is not able to provide,” he said.
Hockensmith says the ALS Association tends to the medical needs of people with ALS by providing access to ALS-specific medical care.
“Texas, in particular, has three clinics — one in Houston, one in San Antonio, one in Austin — that provide care for patients, and also get them access to free equipment while they battle the disease, and just provide that quality of life,” he said.
People living with ALS need a lot of equipment to maintain their quality of life, from wheelchairs to specially designed silverware to hi-tech communications devices that a person can control using just their eyes. Those devices allow them to continue to communicate when they’ve lost their ability to speak. Hockensmith says each person with ALS has different needs, to the ALS Association reaches out to as many individuals as it can.
“We have our care services teams that travel around the state and do home visits and talk about what needs to be adapted in their homes, and just give good consultation about how they can provide the best quality of life as the disease progresses,”Hockensmith said.
Hockensmith says the ALS Association also funds research which might find the cause of this often deadly disease, and eventually lead to a cure. But he says the millions of dollars that have been pouring in as a result of the Ice Bucket Challenge are a game changer for the organization.
“The amount of money that’s been injected into our national association really gives us the ability to take a step back and say, ‘Let’s think really big, as an organization,'” Hockensmith said. “‘Where can we invest this money to see more progress into finding a cause, and, eventually, a cure?'”
The Ice Bucket Challenge has raised a stunning $100 million for the ALS Association.