Jeanette Senerchia, whose husband was diagnosed with ALS 11 years ago, first took the Ice Bucket Challenge in July, after being nominated by her cousin. She had no idea what would happen next.
As of Sunday, the "Ice Bucket Challenge" raised more than $70 million for The ALS Association (compared to $2.5 million during the same time period last year). But while the challenge—the premise of which involves requiring people to either dump a bucket of ice on their heads or make a donation to charity—has become a viral phenomenon, it seems to have started with Chris Kennedy, a pro golfer in Sarasota Florida.
According to Time.com, when Kennedy was nominated, the Ice Bucket Challenge wasn't yet linked to ALS—participants could choose any charity they wanted. Kennedy selected ALS and then nominated Jeanette Senerchia, his wife's cousin, whose husband, Anthony, has the disease. Fast forward a month, and the #ALSIceBucketChallenge is a legit viral sensation: Everyone from Mark Zuckerberg to Anna Wintour to Real Simple has dumped a bucket in the name of raising awareness and donations.
Senerchia lives in the same town as Real Simple's editor, Kristin van Ogtrop. She talked to Senerchia about what the whole experience has been like.
You were one of the first people to take the ice-bucket challenge for ALS, back in July. Did you have any idea it could take off like this?
Absolutely not! When my cousin Chris Kennedy, a pro golfer in Sarasota, Florida, did the challenge on July 15th, he nominated me and said if I didn't accept, I needed to donate $100 to ALS. Chris chose ALS to honor my husband. I was just going to donate but my cousins said I had to take the challenge! So I took it on July 16th and then nominated several friends and family in my town. I said they had to donate $100 to Anthony's ALS Charitable Foundation if they did not repeat the challenge. We absolutely could not believe what happened next. Dozens, then hundreds, then thousands of ALS Ice Bucket Challenge videos which overtook my Facebook page. Within a day or two, we knew something incredible was happening.
I've read that our town, Pelham, NY, really rallied around this cause, and helped it to take off—can you tell me more about that?
Anthony and I grew up in Pelham and decided early on we wanted to stay and raise our family here. I think people really appreciate what Anthony means to our community and what our community means to Anthony. Anthony started the Pop Warner football league and coached 5th and 6th grade youth tackle football for 15 years. Unfortunately, he had to step down last year because ALS took away his ability to communicate effectively with the kids.
It's been 9 years since Anthony decided to be open about his illness and people in Pelham have been so supportive in so many ways. Many of Anthony's former players took the ALS ice bucket challenge in his honor. Pelham Memorial High School alumni got involved including retired teachers from when we attended high school. We joked that it was the biggest online reunion ever.
The support we have received from our community has been completely overwhelming to us.
Your husband, Anthony, has lived with ALS for 11 years. What's one thing you'd want the people who are dumping buckets of ice water on their heads to know about the disease?
This disease does not affect the mind in any way. In some ways that is great and in some ways it's absolutely awful and heartbreaking. It's great because Anthony is there in mind and heart to watch our wonderful daughter grow up. But it's devastating because he's totally alert but trapped inside his body as it slowly fails him.
What has it been like for Anthony and your family to have a relatively rare disease suddenly become part of a viral phenomenon everyone is talking about?
It's been amazing. We've had others tell us we've now done more for ALS than anyone ever has. We're just so happy this disease is receiving the awareness and exposure it desperately needs. And the generosity of everyone across the world that has not only participated in the challenges but donated has been so inspiring and appreciated.
Your six-year-old-daughter took your video and you posted it on Facebook—how do you think the ice-bucket challenge and its virality will change the way people fundraise and raise awareness for causes? Is it a good thing?
I think we will have to wait and see how this changes fundraising. My guess is people will use this as an example of how to be creative when attempting to raise money and bring awareness to a certain cause. Hopefully it will also remind people that the world is willing to donate and help out when they are asked to.
What does your daughter think?
Our daughter has always been incredibly giving and strong. Her dad is her hero and she understands a huge difference is being made because of him. It's great for her to see that all these people are willing to help and give. She recently set up a lemonade stand and is giving all the proceeds to Anthony's non-profit foundation. It's been a great influence on her.
How would you describe this whole experience in three words?
Surreal, Overwhelming, Empowering.
Senerchia and her family recently formed the non-profit foundation The Anthony Senerchia Jr. ALS Charitable Foundation, with all proceeds going to Columbia University for ALS research and underprivileged families who have been affected by ALS.
This interview has been edited for clarity and length.