WEST FALMOUTH – As the ALS Ice Bucket Challenge continues to grow through social media, the head of a local ALS charity is reflecting on what the success of the initiative means for people suffering from the disease and their caregivers.
The challenge began with former Boston College baseball captain Pete Frates who has lived with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, since 2012. ALS is a neurological disease that is fatal.
The challenge has grown exponentially on social media, with celebrities, politicians and professional athletes participating and writing checks to the charity.
Rob Hoffman, founder of Compassionate Care ALS in West Falmouth, said he is surprised at how big the challenge has become, earning more than $50 million in just its first few days for the ALS Association and its 38 different chapters, as well as money for other charities that focus on ALS nationwide.
Hoffman said Frates and his family are among the families the Compassionate Care ALS group tends to.
“I”ve known Pete and his family for a few years. It seems like when he put the challenge out there, it kind of took hold and caught fire so to speak, and it has certainly impacted I’m going to guess pretty much every ALS organization in this country and in Canada,” he said.
But Hoffman said he wishes people would find out more about ALS instead of just writing a check. In addition to the ALS Association, he said, there are other ALS research organizations that are doing cutting edge work.
As for the Hoffman’s Compassionate Care organization, which he started 16 years ago, he said the focus is tending to families living with ALS.
The goal of Compassionate Care, he said, is to bring calm, guidance and awareness to families dealing with the disease.
But the ice bucket fundraising has certainly had an impact on his organization too, he said.
“The impact it has had on us is it has enabled us to do our programming more for our families. . . . We tend to families physically, emotionally and spiritually,” he said.
Hoffman encourages people who have taken the ice bucket challenge to learn more about ALS and the foundation.
“It’s frustrating when I see many of our wonderful celebrities in this country just writing checks and very much writing them in a very blind, private way, if you will. There is so much more to this,” he said.
Hoffman, who began the charity after being a caregiver for a West Falmouth man who got the disease, said he has learned through the years that not everyone has the capacity to do the difficult work of caring for someone with ALS.