My Giving Story

My uncle was the first in my family diagnosed with MS. That was in the late 1930s, when diagnosis of MS was an extremely difficult and tedious process. In those days, there were only a few neurologists fully knowledgeable about the disease, and no one really knew very much about it at all. He was a musician — a concert pianist. Shortly after his diagnosis, it became clear that he was no longer going to play the piano, professionally or otherwise. And, as we all know, there were no treatments available at that time. He died in the early 1940s just a few years after his diagnosis.

So where was the National MS Society when all this was going on? It did not yet exist. In fact, the Society wouldn’t be founded until several years later in the mid-1940s when Sylvia Lawry put her ad in the New York Times trying to get information about the disease with which her brother had recently been diagnosed. So — no effective treatments, very little knowledge outside of a few significant medical centers, nothing in the way of organized programs or services for people whose lives were affected.

When I was five years old, MS struck my family a second time. My parents had bought a new house to accommodate our growing family. Two weeks before we were due to move, we were all at the new house so my parents could make final preparations. My father was standing in the yard in a trench the landscapers had not yet filled in. There was water in the trench up to his knees, yet he had not felt the moisture. He saw his doctor that afternoon and was admitted to the hospital later that day. He was diagnosed with primary progressive MS just as his brother had been diagnosed 20 years earlier. There was still no effective treatment available. My father never returned home after that day and my sisters and I did not see him again. His MS was unusually aggressive and he died two weeks after the diagnosis. 

My mother determined that one of the ways for a child to cope with loss was to view MS as an enemy and to channel anger and grief to the fight against the enemy. Fortunately, there were constructive ways to do that by 1955. The then nine-year-old National MS Society was already taking serious action to reach out to people in every direction to raise money and to make certain that research on MS was being conducted. 

At five, I was not able to conduct medical research (a situation that has not changed over the years), but I was able to raise funds. In those days the Society conducted door to door fund raising campaigns where volunteers carried little boxes shaped like treasure chests known as “Hope Chests for MS.” While my younger sister, Beth was organizing carnivals to raise money with rudimentary rides and games, I took the MS Hope Chest from our house and canvassed the neighborhood seeking contributions. 

The suburban town we lived in was like a small village and my parents, who had been active in civic affairs, were fairly well known in the community. My father’s sudden death at a young age was unsettling to say the least. Each year, I continued my annual appeal to our neighbors until I left for college. We did very well with those appeals to neighbors. I was proud of the impact we were making together.

My life moved forward, of course. While I was completing my law degree some 20 years later, our older sister noticed numbness in one of her arms and some visual disturbances. She called me in an understandable panic — each of us knew our family history and we knew the symptoms of MS. She was, however, assured at the time by her doctor that this was a case of “nicotine poisoning” and just to cut down on cigarettes and she’d be fine. So she went ahead with her long-standing plans for a trip abroad. Two weeks later I received a call from a doctor at a hospital in London to let me know that she had been admitted and had been diagnosed with MS. As it turned out, her MS, like my father’s and my uncle’s, was primary progressive.

Her MS was somewhat less aggressive than our father’s. But, here it was the 1970s, almost forty years after my uncle had been diagnosed and 20 years after my father was diagnosed, and there were still no treatments for this disease; still no real understanding of the disease process, and no answers about its cause. 

There was, however, the National MS Society which was raising funds to support research. In addition, after years of public education campaigns by the Society, there was infinitely greater public awareness of MS and there were programs and services available in many areas of the country for people affected by MS. 

Yet, there was still no cure and no effective disease modifying therapy available to our sister. For 15 years she coped with the unpredictable symptoms of progressive MS until she lost her battle.

I have always been willing to give a little more time to move our cause forward one more step. There is a part of me that still regards MS as the enemy and still needs to do whatever can be done to thwart it. 

We have made incredible progress since the time when MS was ravaging my family. We have learned and continue to learn more about the disease. A lot more. The research that we poured hundreds of millions of dollars into has paid off with a clear picture of the disease process that gave pharmaceutical companies insight into treatment possibilities. In 1993, the first disease modifying therapy for multiple sclerosis was approved by the US Food and Drug Administration. 

Today, 20 years after that first treatment, there are nearly 15 disease modifying treatments and more in the pipeline. The genetic underpinnings of the disease are becoming clear to us. And, we have a sense of what might contribute to triggering the disease process, and even some subtle clues about what might prevent it.

Our organization has changed tremendously also. I’m very proud of where we are today, and of how much we achieved over our history. 

I would like to thank those of you who aid in this fight. I became involved with the National MS Society because I intended to do something about MS. There is still much to be done and I’m proud to be a part of such a successful organization moving closer every day to achieving our vision of a world free of MS.
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Eli

Eli Rubenstein

Eli Rubenstein is outgoing chair of the Society’s National Board of Directors; he has been a director on the Board since 1998 — the same year he won the Norman Cohn MS Hope Award. Eli’s passion turned a handful of volunteer hours into a virtual second job, as trustee of the Society’s Greater New England Board of Trustees since 1980, chair 1994-1996. He was inducted into the Society's Volunteer Hall of Fame in 2007, and joined the board of the MS International Federation in 2010.

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    6 Comments

  • Karen Siebenlist   Dec 2, 2015 10:11 AM
    Thank you all for the hard work and for the stories which help people like me know that I'm not alone ! My mother had MS and passed away in 2001 from complications with her MS and this came almost a year after I was also diagnosed . She blamed herself for this yet they still to this day do not say its hereditary. She also had a first cousin with it. Before she passed I was going to ask her if she would enroll in a study with me and contact the society to see if there were any being done . I'm sure by now there have or are some being done by great and caring folks there.
    Again thank you all !
  • Karen Siebenlist   Dec 2, 2015 10:11 AM
    Thank you all for the hard work and for the stories which help people like me know that I'm not alone ! My mother had MS and passed away in 2001 from complications with her MS and this came almost a year after I was also diagnosed . She blamed herself for this yet they still to this day do not say its hereditary. She also had a first cousin with it. Before she passed I was going to ask her if she would enroll in a study with me and contact the society to see if there were any being done . I'm sure by now there have or are some being done by great and caring folks there.
    Again thank you all !
  • magda   Dec 6, 2015 10:26 AM
    Thanks for sharing I did find out yesterday that I had ms but I learned a lot read all about it
  • bigvi  Dec 22, 2015 8:24 AM
    What would you like me to say? I don't have MS any more. I tried to tell you how I was able to get real relief from MS. Everyone shut me down. So I'm sorry you won't let me in. Well, I'll enjoy it myself, with my boyfriend.
  • julie   Jan 16, 2016 2:45 AM
    So are they saying this is genetic
  • Avatar
    anna1982  Feb 12, 2016 9:46 AM
    Thank you for sharing your story with me. I can't believe that MS starting in your family in the 1930s! Also I am sorry about the loss of your family members due to MS. I praying that there is a cure someday. My husband, sister-in-law, and mother-in-law all have MS, I find it hard that its not hereditary as well.