In Memory of Richard J. Berkowitz

It is with the most profound sadness that Home Dialyzors United announces the death of its founder and president, Richard J. Berkowitz.  Since founding NxStageUsers, the precursor of the present organization, Rich has been a persistent voice for home dialyzors, for home modalities and for bettering the quality of life for patients.  He was outspoken in his belief that every single patient deserves to live a normal life on their own terms

Rich was single-minded in his quest to work with members of the House of Representatives to revamp and reenergize the Congressional Kidney Caucus.  In 2012, HDU organized a Capitol Hill briefing with patients and care partners to educate members about home dialysis. As a result, Members better understood patient needs and the Caucus has more effectively worked to protect and advance the rights of patients.

In 2013, Rich spearheaded a campaign which resulted in a definitive ruling by the United States Department of Transportation that portable dialysis machines are indeed included in the definition of medical equipment and, as such, must be transported by airlines free of charge. This decision will benefit both current and future patients, enabling them to travel with less worry.

In addition, he initiated HDU’s annual conference which brings together professionals, patients and care partners to share ideas in an atmosphere of true equality.

Rich’s passion for patients has been evident in the online support and encouragement found in HDU.  This determined devotion was seen as often in the 2AM motivational emails or calls as it was in his powerfully written blogs, public comments and articles.

Joe Turk, the President of NxStage Medical, shared these sentiments: “NxStage’s thoughts go out to Rich’s family, his friends, and all of the many people he touched with his unique passion for expanding access to home dialysis therapies.  Clearly patients have lost an incredible advocate, and we have lost a good friend.”

Rich’s legacy will live on in the lives of those patients and families who are thriving through home treatment and who are inspired to “pay it forward” by advocating for improved quality of life.


5 thoughts on “In Memory of Richard J. Berkowitz

  1. This is a sad day, Rich was a friend who called and encouraged, when most of us concentrate on our own problems when kidney failure strikes Rich turned outward and saw the need for a community of users, he jumped in and made it happen, growing it to a powerful voice for patients that educated and advocated for home dialysis and more access to the most effective modality, while dealing with all the ups and downs of dialysis we all know so well.
    He was enthusiastic and creative, and very determined, I am proud to have known him and take inspiration from his attitude to life.

  2. Below is a tribute by Melissa Sondergaard that she wrote on Facebook and gave me permission to share:

    I don’t post here very often but I just have to honor Rich Berkowitz and tell you all a little bit about how he has impacted our lives.

    I “met” him nearly two years ago online after desperately searching for solutions to what seemed at that time impossible problems. My husband and I are a Danish/American couple separated by immigration issues and ESRD. I can’t live in Denmark and he can’t leave his medical team to live with me in the US.

    Rich not only gave me personal emotional support, he reached out to my husband and gave us real, workable strategies both when I was preparing to leave Denmark under duress and especially when I was alone here in the states, so worried, so scared. Rich and Henning developed a great friendship, and my feelings toward Rich bordered on worship.

    Rich was our main source of information regarding NxStage, and his persistence in the face of any obstacle gave me the confidence to keep going during some dark days when I wondered if I would ever be able to spend more than a few weeks at a time with my husband. He introduced Henning to some amazing people, gave us contacts and pushed us when either of us faltered.

    Ultimately, Rich invited Henning to travel from Denmark to speak at the most recent HDU Meet-up, and THAT in turn forced Henning’s medical team to move far more quickly than they had previously. Because of Rich I was able to spend an amazing weekend in Florida meeting not only him but his amazing wife, Karen. And because of that conference, my husband and I were able to spend the last three glorious months together. Henning did return to Denmark early this month, but the work that was done has paved the way for future visits.

    All too often we realize too late how blessed we are. “You don’t know what you have ‘til it’s gone,” is a frequent refrain. However, in my case, I knew from our first conversation how very special Rich was. I am honored to have met him, to become a member of this group. I was able to do a few small things for him in Florida, and it was my very great pleasure to help out in any way I could. I will always be indebted to Rich and Karen for the kindness they showed us.

    It is my hope that Henning and I can continue to work with HDU and this group in any way we can. We do so not only to honor our great friend, but to honor his legacy of advocacy, activism and support in this community.

  3. Losing Rich is a huge loss for the home dialysis community, a community HE built. Through his leadership, he built (now Home Dialyzors United),which brought both users and caretakers together. It was Rich that put together the user conference for the last 3 years and what a success they’ve been. Through Rich’s efforts I have made many friends and a built what I hope will be long lasting relations. he was always helping others whether it be a phone call or sharing his wealth of knowledge. Most of all, he taught me that just because I have a chronic illness doesn’t mean I have a death sentence, that being on home hemo allows me to live a “normal” life. He taught me to stand up for myself when dealing with my medical team. He made me feel proud that I’m a home dialyzor. He once said “Let’s raise our voices to make a change for others waiting (to start home hemo). No dialysis patient should have to give up the opportunity to live a better life or extend their life. It we patients don’t do it, nobody will.” He was a great role model. I’m going to miss his impish smile and his warm heart. When I’m feeling sad and want to throw in the towel, thinking of Rich and what he’s done for all of us will give me strength. RIP Rich, you will never, ever be forgotten. You’ve made a difference, more than you know.

  4. To Richard of Skokie
    from Richard of Boston…..

    I will miss those late night discussions learning to appreciate your sense of humor as I hoped you learned to understand mine.

    What we talked about came together as very interesting conversation about our home hemodialysis experiences. You taught me so much. Those talks meant so much to me.

    Richard, you will be missed because you ran with the torch that lit the flame for nocturnal home hemodialysis. No one could have been a better communicator for the advancement of home hemodialysis than you.

    I want to thank you for all of the conferences you put together that I couldn’t wait to attend.

    I will remember the lessons you taught me of what to watch out for and what is to come.

    To Richard of Skokie
    from Richard of Boston…..

    I don’t know where you are but I know that someday we’ll be talking again.

  5. I am so, so sorry to hear this. Rich is a true friend that will be greatly missed. All of our conversations brought a smile to my face. Words just aren’t enough. I will miss you buddy!

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