“IT’S very simple. I am a mom and when my 27-year-old son told me he was suffering from this awful disease, I had to do something.” Like any mother, Nancy Frates went across the length and breadth of the world to save her son. She gave people a reason to dump a bucketful of ice on themselves to support the ALS (Amyotrophic Lateral Sclerosis) community and raise funds for its research and cure.
It’s been four years since her son Pete was diagnosed with ALS, and Frates and her family kickstarted the Ice Bucket Challenge. They have raised more than $140 million for ALS, commonly known as Lou Gherig’s disease, a progressive neuro-degenerative disorder. The funds have helped John Hopkins Medicine, Baltimore, make a breakthrough recently in understanding ALS.
Frates, Director of ALS Association since November 2014, was in Mumbai to deliver a talk on ALS at the Eemax Global Conclave and Awards to be held on September 19 and 20. She also runs Team Frate Train and the Pete Frates #3 Fund, which raises money for Pete.
A gifted communicator and sportsperson, Pete’s optimism drew the world’s attention to ALS, including the likes of Bill Gates. Gates was among the millions who took the Ice Bucket Challenge, posted it and passed it on. India too saw its share with celebrities such as Riteish Deshmukh, Abhishek Bachchan, Sunny Leone, Sonakshi Sinha to Siddharth Malhotra, Varun Dhawan, Akshay Kumar, Yuvraj Singh, and Sania Mirza, taking the challenge.
As Pete battles for his life, (he is on ventilator now), Frates has set every August as a renewal to the challenge till a cure is found. This year again, Hugh Jackman helped kickstart the challenge on Twitter. “We studied a lot of other campaigns, on AIDS, breast cancer, to understand how they were a success. We are not scientists, we are plain business people, and I wanted to increase its reach. It was on social media that Pete’s story really hit a nerve with everyone, and people opened their hearts to it, and soon their wallets too for they understood the need for a cure,” she says. The viral vantage strengthened further, because, according to Frates, patients suffering from ALS are disabled and can only use social media to connect and communicate.
It’s her second visit to India, and Frates is humbled by the response. She agrees that they have faced criticism over wastage of water, and even seen a scam or two. “But that’s part and parcel of any project. The main thing is that it’s working, funds are being used for research.”