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I must use the privilege of this column to acknowledge the passing of one of our <a href="https://alsnewstoday.com/what-is-als/">ALS</a> heroes, <a href="https://alsnewstoday.com/news/ady-barkan-universal-healthcare-featured-not-going-quietly-documentary/">Ady Barkan</a>. 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 <a href="https://www.nytimes.com/2023/11/02/us/politics/ady-barkan-dead.html">died</a> on Nov. 1.
Although he knew his own life was nearly over, and while his body was progressively being ravaged by an <a href="https://alsnewstoday.com/symptoms-of-als/">all-out ALS assault</a>, Ady gave all he and his family had for the benefit of others. Their sacrifices will go down in the annals of <a href="https://alsnewstoday.com/columns/lets-step-up-advocacy-efforts-als-research/">public health advocacy</a> 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&#8217;t have to reach the age of 65 to need it.
<blockquote class="twitter-tweet" data-width="500" data-dnt="true">
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] <a href="https://t.co/KZ8k73Gujp">pic.twitter.com/KZ8k73Gujp</a>
&mdash; Ady Barkan (@AdyBarkan) <a href="https://twitter.com/AdyBarkan/status/1719895098954322210?ref_src=twsrc%5Etfw">November 2, 2023</a></blockquote>
<script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
<h3>Those who light our way</h3>
There have been many men and women who have <a href="https://alsnewstoday.com/living-with-als-2/">lived with</a> and <a href="https://alsnewstoday.com/notes-from-the-als-front-rick-jobus/">passed away from ALS</a>, and I acknowledge them all, especially the young ones. Two have had a profound impact on my ALS advocacy: <a href="https://alsnewstoday.com/news/als-patient-who-created-ice-bucket-challenge-is-honored/">Peter Frates</a>, 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&#8217;t get me wrong, there are other great models of excellence out there doing good things as well. <a href="https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-als-disability-lifestyle-influencer/index.html">Lauren &#8220;Lolo&#8221; Spencer</a>, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> 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&#8217;t let ALS stand in the way of what she wants to accomplish. <a href="https://iamals.org/stories/mayuri-saxena/">Mayuri Saxena</a> has a heartbreaking story about her life before and after her diagnosis. Go to her <a href="https://www.facebook.com/groups/156722665270133/user/5307349/">Facebook</a> 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.
[recommended-reading id=85557]
Then there is a young lady who does not have ALS, <a href="https://www.wkbw.com/news/local-news/diagnosed-at-37-the-fight-for-access-to-als-treatments">Michelle Lorenz</a>, 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 <a href="https://alsnewstoday.com/experimental-treatments-for-als/">medicines</a> that extend our lives. She works so hard and refuses to take no for an answer. She also has a <a href="https://www.facebook.com/groups/156722665270133/user/1374970069/">Facebook</a> 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 <a href="https://www.youtube.com/watch?v=Eehh_NVqiyg">interviews</a>, appearances before Congress, confrontations with individual representatives and senators, and the documentary &#8220;<a href="https://www.pbs.org/pov/films/notgoingquietly/?gclid=CjwKCAiA3aeqBhBzEiwAxFiOBii5pjObnI6ptqJq9yca4enJDw8Qmg4hh6-hLHuTAxJjX_lwisvfXhoCzTIQAvD_BwE">Not Going Quietly</a>.&#8221; You will see sacrifice, commitment, dogged <a href="https://alsnewstoday.com/columns/als-affects-my-hand-strength-its-no-match-my-determination/">determination</a>, and unbounded love. You will see the man Ady Barkan.
I appreciate Ady&#8217;s work. You should, too.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Ady Barkan leaves an indelible legacy of tenacity and advocacy

As I consider the progress we&#8217;ve made on <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, I can&#8217;t help wondering if our overall awareness will continue to grow and lead us to even more sensitivity and <a href="https://alsnewstoday.com/columns/urgent-call-funding-als-research-patient-support/">advocacy</a>. What real action will take place? Will initiatives be developed and sustained? Will we patients be closer to relief next year than we are today?
<a href="https://www.als.org/">The ALS Association</a> answered my inquiry regarding its plans by informing me of current and future activities, which are comprehensive and wide-ranging. I trust its efforts will be successful and generate much-needed funds. I also hope we&#8217;ll continue our collective efforts all year long.
One great event took place in my hometown of Cincinnati, when the Reds baseball team and the Zac Brown Band <a href="https://www.wlwt.com/article/reds-and-zac-brown-band-team-up-raising-dollar200k-for-als/44100147">raised $200,000</a> for ALS research. One of the band&#8217;s members, John Driskell Hopkins, has ALS and has become an advocate in the fight against the disease.
[recommended-reading id=71503]
<h3>Toward lessening suffering</h3>
We need one another, across all of the superficial boundaries that divide us, because anyone can get ALS or any of many lesser known but similar diseases that have no cure. One of those diseases that I&#8217;ve learned more about is <a href="https://my.clevelandclinic.org/health/diseases/24077-spinocerebellar-ataxia#:~:text=Spinocerebellar%20ataxia%20(SCA)%20is%20a,Eyes.">spinocerebellar ataxia</a>, mainly because I have a friend whose husband and daughter now have it.
Considering how badly patients suffer from these rare ailments, our society should do all we can to lessen that suffering — not just during a designated period of time, but continually.
How can we accomplish that? Well, I think the Zac Brown Band and the Cincinnati Reds put forth an excellent duplicative model. Imagine how much money could be raised if at <a href="https://fansided.com/2023/04/14/number-games-mlb-season/#:~:text=The%20MLB%20season%20is%20162%20games%20long." rel="nofollow">162 baseball games</a> (the 2023 total for Major League Baseball) and <a href="https://www.cbssports.com/nfl/news/nfl-schedule-2023-date-times-tv-channel-live-stream-matchups-for-all-272-games-during-regular-season/#:~:text=Mock%20Drafts-,NFL%20schedule%202023%3A%20Date%2C%20times%2C%20TV%20channel%2C%20live,272%20games%20during%20regular%20season&amp;text=The%202023%20NFL%20season%20is,game%20schedule%20started%20in%202021)." rel="nofollow">272 football games</a> (the 2023 total for the National Football League), each patron would donate $5.
I <a href="https://alsnewstoday.com/columns/dreaming-life-husband-doesnt-have-als/">may be dreaming,</a> but it&#8217;s a great dream. I&#8217;m grateful for all the events and other efforts thus far in support of ALS research and patients. I believe that whatever we set as our collective goal, we will accomplish.
Finally, there is <a href="https://als.quorum.us/campaign/48456/">an effort by the ALS Association</a> to get more and faster approval for external ventilators. They&#8217;re so vital to a patient&#8217;s quality of life, and in my case, the quantity of life. No one who <a href="https://alsnewstoday.com/living-with-als/breathing/">needs breathing equipment</a> should have to do without it or wait an inordinate amount of time and jump through insurance hoops to obtain it.
Here&#8217;s to everyone who helped us last month and to those who&#8217;ll help us in the future. Stay strong and engaged in your commitment to advocacy.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: advocacy

Ady Barkan leaves an indelible legacy of tenacity and advocacy

Let’s step up our advocacy efforts for ALS research