Ady Barkan leaves an indelible legacy of tenacity and advocacy
Barkan was a stalwart ALS warrior who never stopped fighting for change
I must use the privilege of this column to acknowledge the passing of one of our ALS heroes, Ady Barkan. A young, stalwart, and dedicated husband and father, Ady spent the final few years of his life fighting for those without adequate healthcare in this country. Ady died on Nov. 1.
Although he knew his own life was nearly over, and while his body was progressively being ravaged by an all-out ALS assault, Ady gave all he and his family had for the benefit of others. Their sacrifices will go down in the annals of public health advocacy and will always be an example for us to emulate. He showed the world how to confront political power without sheepishness and fear.
Ady displayed what those of us with ALS know all too well when it comes to the critical and tenuous efforts of speaking and breathing. And he did it unashamedly. I am so proud of what this man did to illuminate the need for Medicare for all, not for selfish or political reasons, but because you don’t have to reach the age of 65 to need it.
Hi all, this is Ady’s wife, Rachael. I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years. [1/4] pic.twitter.com/KZ8k73Gujp
— Ady Barkan (@AdyBarkan) November 2, 2023
Those who light our way
There have been many men and women who have lived with and passed away from ALS, and I acknowledge them all, especially the young ones. Two have had a profound impact on my ALS advocacy: Peter Frates, founder of the Ice Bucket Challenge, which raised hundreds of millions of dollars in contributions to ALS research, and Ady Barkan. They did what more of us should do: advocate, raise funds, and confront the power structure.
Don’t get me wrong, there are other great models of excellence out there doing good things as well. Lauren “Lolo” Spencer, diagnosed with ALS at 14, is actively using her ALS lemons to make lemon pie, lemon pudding, lemon cookies, and lemonade to wash it all down. I was on a panel with her, and her enthusiasm was off the chart.
Another one is an amazing young lady who doesn’t let ALS stand in the way of what she wants to accomplish. Mayuri Saxena has a heartbreaking story about her life before and after her diagnosis. Go to her Facebook page and read her story about how the negative and unhealthy spirit within her was defeated by an indomitable spirit to live and grow despite having ALS. My daughter loves her.
Then there is a young lady who does not have ALS, Michelle Lorenz, but is an indefatigable and staunch fighter for ALS patients. I have worked with Michelle on phone and Zoom calls to urge senators in Congress to push for U.S. Food and Drug Administration approval of medicines that extend our lives. She works so hard and refuses to take no for an answer. She also has a Facebook page where you can keep up with her current and past accomplishments.
Now, back to Ady Barkan. The first time I saw him on TV, he was speaking before Congress in a physically normal manner. I was very impressed by his advocacy and knowledge of the subject matter.
The next time I saw him, he was walking down the street while being interviewed by reporters. His gait and speech had obviously deteriorated. He struggled to answer every question. I was impressed then, and I remain inspired to this day. I have no excuse for inaction, and Ady played a major role in that.
I encourage you to watch his many interviews, appearances before Congress, confrontations with individual representatives and senators, and the documentary “Not Going Quietly.” You will see sacrifice, commitment, dogged determination, and unbounded love. You will see the man Ady Barkan.
I appreciate Ady’s work. You should, too.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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Fran Finney
James, I came across your recent column "life in D minor". As the spouse of a PALS who I lost to ALS several years ago, I was very touched and impressed by the sentiments you expressed. Sometimes family members, myself being another example, can inadvertently make choices more difficult for those we love by our unwillingness to accept the inevitable pathway of the disease.
That column lead me to looking you up and discovering this column.
I first met Ady Barkan in November 2016, shortly after his diagnosis, and just over a year after I lost my husband to ALS. I was Ady's Care Manager/liaison with our ALS Associaltion chapter. I had the privilege of getting to know Ady and his family as his disease progressed. I had never met anyone like Ady. He was a passionate activist, a truly admirable, incredible, and unique person. Ady was determined to use his ALS as a way to make an even stronger impact on our world and its inequalities.
Thank you for taking the time to help recognize Ady, and others who have done so much for ALS advocacy.