Anyone with a social media account (or a computer for that matter) has seen it: friends and celebrities dumping buckets of ice over their heads in the name of raising awareness for ALS. The Ice Bucket Challenge has been making the rounds since the end of July and in that time has led to $41 million in donations to the ALS Association (and counting). People post videos of themselves shrieking from the cold splash of ice water and then nominate friends to do the same or donate $100. The charity stunt has received quite a bit of criticism. Will Oremus at Slate argues that “few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the ice bucket videos feel like an exercise in raising awareness of one’s own zaniness, altruism, and/or attractiveness in a wet T-shirt.” He encourages people to skip the ice and “just donate the damn money”.
Whether you think its a narcissistic stunt or a valid approach to raising awareness, the fact is that its working. People who never heard of the disease are talking about it and a ton of money is being raised. And for that reason, I say go for it.
My understanding of the rare disease came a couple of years ago when I was assigned by Money Magazine to spend 2 days photographing Steve West, who was diagnosed with ALS in 2009, and his wife Pam at their home in Philadelphia. His first symptom was feeling weakness and tingling sensations in his left leg while jogging. Within 6 months he was given the devastating prognosis: there is no cure for ALS and is usually fatal within 5 years. While nerve cells slowly shut down throughout the body, the mind remains sharp as a tack. By the time I met Steve, he had lost the use of his legs and arms and needed to use a respirator several times a day to help with his breathing. I was struck by his kindness and positive attitude. Pam became his full time caregiver with support from visiting nurses, social workers and neighbors. She tries to keep their routine normal, taking him out on neighborhood walks and for lunch at the local pub. It is now over 5 years since Steve’s diagnosis. The muscles in his torso have stopped working so needs the ventilator full time. Speech and eating have become more difficult. He receives in-home hospice care. But his spirits have been lifted each time another friend or family member takes the ice bucket challenge in his name. Steve and Pam have been directly impacted by the services offered by the ALS Association’s Philadelphia Chapter as well as Team Gleason and encourage people to give what they can.
How you can help:
According to a 2013 study by the Muscular Dystrophy Association, ALS costs a family an average of $65,000 per year. The ALS Association’s Philadelphia Chapter works seamlessly with the Pennsylvania Hospital ALS Clinic—working with team clinicians at the clinic and making important in-home visits. Their home care and respite program provides essential relief to caregivers. Counselors and social workers visit at home and a loaner closet defrays the costs of pricey patient lifts, wheelchairs, and other equipment. In addition, the chapter’s assistive technology resources are a national resource.
Team Gleason helps to provide patients with ALS and other neuromuscular diseases with leading edge technology, equipment and other services.
Steve spends mornings with his granddaughter Grace, 2, who has learned to hug him even though he can’t hug her back
Steve uses voice-recognition software to read the news and stay in touch with family and friends via email
Steve makes his way downstairs in an elevator, which the couple had to install for $24,000
Steve and Pam have spent thousands of dollars on medical equipment including a hospital bed, wheelchair, lift and elevator. House renovations cost the couple over $50,000 to make it wheelchair accessible.
All photos ©Annabel Clark 2012