In the course of a few months, the Anthony Senerchia Jr ALS Charitable Foundation has gone from a small local foundation promoting awareness and helping families with ALS, to becoming the touchstone for one of the most recognized and effective charitable social media phenomena.
Twelve years ago, Anthony and Jeanette Senerchia, high school sweethearts, were in love and starting out a new life together in their hometown of Pelham, New York. Though Anthony had some symptoms of muscle weakness, it wasn’t until several months later they were given the devastating news that he had ALS.
Amyotrophic lateral sclerosis often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The progressive degeneration of motor neurons damages the brain’s ability to initiate and control muscle movement. With voluntary muscle action progressively affected, patients in the later stages of the disease often become totally paralyzed.
Despite the diagnosis, Anthony and Jeanette remained determined to create a beautiful life together, including raising a family of their own. To help raise awareness and to support other local families dealing with ALS, the Senerchia’s and friends arranged an annual softball tournament and other events. Monies raised were donated to the Columbia University ALS gift fund at Columbia University Medical Center – where Anthony was being treated.
In early 2013, Anthony and Jeanette decided to expand their charitable work by forming a small foundation. Then, in July 2014, just as their non-profit status was about to be granted, Jeanette was approached by her cousin’s husband to do an ice bucket challenge – with the option to donate to the ALS Foundation.
Though the ice bucket challenge was originally meant to allow participants to donate to any charity, something remarkable happened right after Jeannette’s video went online. Jeanette said the ice bucket challenge was to help raise ALS awareness. It immediately spread through her town of Pelham, NewYork, then to other people in the ALS community. Within a few days, 1000 people had seen the video and taken the challenge. Within weeks, thousands more were participating. Suddenly the Ice Bucket challenge became associated with the search for a cure for ALS. It became a national, then global phenomenon.
What began as a simple gesture of good will became one of the most successful fund-raising campaigns in history. To date, it is estimated that well over 100 million dollars has been donated to ALS charities throughout the world.
Though the ice bucket challenge phenomenon has receded for the moment, Anthony and Jeanette continue their own charitable work. Their foundation has been helping other ALS families who have been struggling financially. They also believe in supporting their own community, and demonstrate how simple acts compassion, love, and humor can change the world — and to help one day find a cure for one of our most challenging health problems.
The National Health Leadership Award. From the inception of The National Physician of the Year Awards, Castle Connolly Medical Ltd. has always recognized non-physicians and their organizations for their role in impacting our nation’s health. The list of names is impressively star-studded – Mehmet and Lisa Oz, Marlowe Thomas, Evelyn Luader, Princess Yasmin Aga Khan to mention just a few. The organizations they represented loom large on the healthcare scene – Susan G. Komen Foundation, Wounded Warrior’s Project, St Jude’s Research Hospital, Breast Cancer Research Foundation, Christopher Reeve Foundation, and many, many more.
Then there is this year’s winner: The Anthony Senerchia Jr ALS Charitable Foundation. A small, community-based foundation based in Pelham, New York, whose charter is to help raise ALS awareness and to help other families with ALS. To date, they have raised just over $100,000 that they have donated primarily to Columbia University Medical Center’s ALS program where Anthony was treated. Impressive for a family run foundation, but not at the order of magnitude of St Jude’s that raises hundreds of millions each year for childhood cancer research.
Yes, as a couple their original Ice Bucket Challenge Facebook video was the touchstone for one of the greatest fund-raising campaigns in history. But isn’t that more an accident of fate than actual accomplishment?
Actually, there is a story here about true leadership – a tale of what each of us can do as individuals, not organizations, to change the world.
I first spoke with Jeanette Sernechia over the phone. She was ebullient and charming – seemingly as amazed as to what happened with The Ice Bucket Challenge as anyone could be. I ask her, “”What is the best part of the entire Ice Bucket Challenge phenomena?”” She blithely replies, “”I got to meet Derek Jeter.”” Later in the conversation, she demurely commented on the past few months, “”This was my 5-minutes of fame.”” (I pointed out that actually she gets “”15 minutes worth of fame”” and has another 10 minutes to go.)
Meeting them in person? Jeanette is bubbly and beautiful, with a quick, radiant smile. Anthony is wheelchair bound with very limited mobility and can no longer speak. Yet despite the differences, they seem very much a happy couple – filled-with good humor and love. In fact, the entire Senerchia clan – who came to the awards dinner with them – were to a person good-humored, proud and happy.
There is a lesson to be learned here – for in the middle of all this warmth, there is a man with a great disability. Though I think it would be best if the lesson to be learned was told by Anthony. Though he can no longer speak, he can think and write. Here is what Anthony said as part of his acceptance of The National Physician of the Year Awards, as read by Jeanette:
Jeanette and I would like to thank John Castle, Dr. John Connolly and the entire Castle Connolly Medical team for recognizing our charitable foundation here tonight. We stand in front of you humbled, and incredibly honored.
We would also like to thank Dorine Gordon, President and CEO of the Greater New York ALS Chapter and Dr. Hiroshi Mitsumoto, head of Columbia Presbyterian’s ALS research center, for being with us here tonight. Dorine has not only been an instrumental part of our journey, but an incredible leader for us and the entire ALS community. I have been seeing Dr. Mitsumoto and his team for 12 years now, I can’t help but be inspired by a man who has dedicated his life to finding a cure for ALS. I would sincerely like to thank you both.
On May 17, 2003 I married my high school sweetheart; I was 32 years old and Jeanette was 30. It was just two months later, on July 23, 2003, that I was diagnosed with ALS and told I had only 2-5 years to live. I remember every detail of that morning. I went outside, and on the corner of 168th and Ft. Washington, I bought a small coffee, milk no sugar and a glazed bowtie doughnut. As I sat on a wall , I wondered how I was going to tell my parents , my three brothers , my friends, and most importantly, my new wife .
I told everyone that night I wouldn’t be the average 2-5 years, and to please not let it consume them because I was going to refuse to let it consume me. I was determined to just live my normal life. I remember telling Jeanette that there are many people worse off than us and that everyone will endure obstacles in life. ALS was ours, and it’s how we handle those obstacles and move forward in a positive way that will ultimately define who we are.
Two years later, my brother Joe and friend Danny approached me about doing an ALS charity softball tournament. At first I was reluctant because I’m a pretty private guy. But I agreed only on the condition that all donations would be made directly to the Columbia University ALS Gift Fund. Now, nine years later, we’ve donated over 130,000 dollars to Columbia University ALS Gift Fund for ALS research. That has been our small contribution to fight ALS.
On March 6, 2008, Jeanette and I were blessed by the birth of our daughter, my angel Taya Rose. It was when Taya was entering school and starting having play dates that I found myself hiding in other rooms because I didn’t want her friends always asking her why does your dad talk funny? But this wasn’t fair to her, because to her, I was just her normal dad. It was at this time we thought about creating a foundation. With this foundation, we would not only generate ALS awareness, but also educate children and adults in our community. Jeanette and I are fortunate to have incredible family and friends, so together we decided our charity would help other ALS families who are less fortunate.. We wanted Taya to learn that it’s not what we take from life, but rather what we give back to others that’s important.
During the phenomenon of the ice bucket challenge, our daughter and her friend decided to set up a lemonade stand. When they were done, they donated their $44.00 to ALS. It was amazing and an incredibly proud moment for us as parents. This is why last month, when we were invited to Facebook to review data, I was asked the question, “”What would you say, if a man in a bar said the ice bucket was bull?”” My response would simply be, “”Do you have kids?”” Because those of you that do know that as parents, we would do anything in our power to protect and guide our children through difficult times, and to teach them about love and compassion for all. While we’re extremely happy and proud that the ALS association received an unprecedented amount of donations, for us it was the awareness that was most important. It’s about the comfort I now have communicating with my daughter’s friends using my eye gaze machine instead of hiding. And most importantly, it’s about the valuable life lessons it has taught our daughter Taya.
We are very proud to be at the forefront of this incredible movement, but it was more than that. It showed the good that’s in all of us, how everyone from around the world rich or poor, famous or not came together one hot summer to support ALS.
That’s what we are most proud of.
So a question arises: How would anyone of us respond to such devastating news – as the Senerchias faced – at the beginning of a new marriage? A time when all your hopes and dreams are at their brightest.
One can imagine that Anthony and Jeanette faced moments of great struggle and sorrow. Yet you sense immediately upon meeting them that their accomplishment is far more than showing a positive face to the world – that despite whatever doubts and questions they faced, their love and joy is authentic and deep. It is also obvious how deeply The Ice Bucket success has moved them. The Senerchias are a testament to how the darkest of situations can bring out the very best in each of us, and enrich the lives of those who know us.
So in the truest sense, the Senerchias are perhaps one of the most deserving recipients of the National Health Leadership Award. Most of the other winners leveraged various degrees of their celebrity. The Sernchias are the first to admit they are not celebrities – that their fame is an accident of Fate.
Or perhaps the Fates did choose them. Why? Because as a couple, as individuals, they have demonstrated to all of us how to best live a life to the absolute fullest, no matter what the challenge. That is leadership — ice bucket or not.