My Journey With Diabetes

Diabetes is a terrible, terrible disease. At first my knowledge of diabetes had always been vague and horribly lacking in knowledge. No-one in my extended family had diabetes, or revealed it, when I was growing up. All of this changed one day when my wife Shirley and I were told by our daughter's pediatrician, Dr. Morton Levy, that Elizabeth was a Type I diabetic. At the time, Elizabeth was about 5 years old. This essay is not about Elizabeth and her health problems as that is a private matter only to detailed by her if and when she ever decides to do so. I write only to tell the story about how it effected the Gallo family and our action to support "Liz." With both Shirley and me being ignorant of the subject of diabetes, we attempted to learn all we could and as quickly as we could. Shirley was employed during our early marriage in the research department of a political research non-profit so she helped a great deal with investigative phone work and file organization. We must remember in the 1960's diabetes knowledge was primitive compared to today. A diabetic person today may personally read their blood sugar several times a day. Back then with Elizabeth, it might be a number of times a month. And then it was at a pathology labratory or hospital paying $20 each time. Gauging blood sugars was done with urine samples, producing wild swings in amounts of insulin to adjust for. Dr. Levy (Mort) was a personal friend gained through our membership in the Baton Rouge Kiwanis Club. Kiwanis is much about the power of personal involvement to make society a better way of life. One day after finishing a medical appointment for Elizabeth at Dr. Levy's office, Dr. Levy engaged me in converstaion about how Shirely and I were coming along with our diabetes learning process. I remarked, "Terrible!" I went on to explain that Louisiana had, at best, very little to offer for a person with diabetes. Plus, I went on, there was not any national or local non-medical organizations to become a member of to build peer friendships of persons with diabetes or their family and friends. "Why don't you start one?" he remarked. Later I told Shirley about what Dr. Levy had suggested and Shirley basically said, "Let's do it." In December 18, 1975 the "Greater Baton Rouge Diabetic Association, Inc. was formed. It attracted many supporters immediately. One of its most endearing features which my wife Shirley and many mothers were a part of was to visit newly diagnosed diabetics at the hospital and stay connected with them as each progressed in the early learning process. A very "high touch" approach. At that time the American Diabetes Association, ADA, was a highly fractured national organization with a number of affiliated "chapters" around the country appointed but each with no state connected identification. And the organization was more medical than lay. The Executive Director at that time was Jack (last name to be researched) and a fine person. But I'm getting ahead of my story here. In 1976, a year after its founding, the Greater Baton Rouge Diabetic Association, Inc. held an annual meeting at the Prince Muret Inn, near the Baton Rouge campus of Louisiana State University, LSU. ADA, through its field representative, learned about the meeting and Jack (last name needs research) called to see if he could attend, and he did. And he wanted our group to be part of ADA. My work experience has always been in turnaround management. As Jack and I discussed the possible relationship I criticized ADA over its fractured national setup. He asked what should it be, to which I answered, "One State, One Affilliate." And it was then that he asked me if I would spearhead that approach at the national level because he thought it was the right path for ADA. I said I would. In February 2, 1977, the Baton Rouge diabetic association ceased and became the Louisiana Diabetes Association - Louisiana Affiliate, Inc. The first one state, one affilliate under the new scheme began. However, some local trouble loomed ahead. One of the chapters appointed by ADA prior to the new scheme of organization was a New Orleans chapter. When the New Orleans chapter found out about Louisiana having one state affiliate classification and that the New Orleans chapter would be technically under the Louisiana affiliate, that didn't set well with them. In fact, many of their leaders were hostile to the idea. Hat in hand, I made an appointment to go to New Orleans and meet the chapter's chairman, Bill (last name to be researched). I made my case and partially won the day by pledging that New Orleans chapter leaders would be appointed to the Louisiana Affiliate's Board of Directors in sufficient numbers to strongly represent New Orleans. I then invited a number of the New Orleans chapter leaders to my home for a meeting with our Affiliate leaders to discuss moving ahead. This would have been about the middle of 1982. It was a sucessful because November 3, 1982 the New Orleans chapter ceased and became part of the Louisiana Affiliate. And the move went on. Booming success. An affiliate office was opened, and staff hired. The United Way began to fund the affiliate along with government group. The summer camp for young diabetics moved to a better facility supported by the state Lions organization. The ADA Louisiana affiliate gained the attention of the national ADA board of directors when its new executive Bob Bolan visited Baton Rouge for an annual meeting. I remember well how impressed he was, so much so that many of our affiliate leaders were appointed to national positions including me. I was appointed to the Affiliate Associations Committee chaired by a fine volunteer (first name to be researched) Davis, an attorney from Tennessee. After a few years on the Affiliate Associations Committee I was appointed to the national ADA board of directors. During that time Shirley and I traveled the United States working to achieve the new plan of organization of each state having one state affiliate manging the state. It was a difficult task as many of the local chapters were resistant to the idea of one state, one affiliate. At one meeting in Kansas, after Shirley and I traveling there, upon entering the meeting room, we were asked to leave, which we did. There must have been a knock-down meeting thereafter, because later we were rescued and brought back to the meeting for a successful conclusion in naming Kansas as a statewide affiliate. In 1985 I attended a regular board meeting in New York City where ADA had its headquarters. Caroline Stevens was a top ADA officer and I met with her before the board meeting, then the two of us walked to the board meeting. During that walk, Carolyn mentioned that I was going to be named Vice-Chairman, an automatic step to the Chairman position. I remember distinctly saying, "Why me?" Caroline said the nominating committee felt that I possessed vision which ADA needed at that time. "Vision" is an exact quotation. One of the responsibilities of the Vice-Chairman was to lead the move of the ADA headquaters from New York City to Alexandria, VA. That was fun! The part that was a negative about the relocation of the headquarters was not going to New York City. You see, for some reason the Waldorf Astoria Hotel had a strong attachment to the ADA so when we went to meetings in New York City we stayed at the Waldorf. A proud time for the Gallo family's support of Elizabeth was when I became national chairman in San Diego, California in 1986. The entire family attended, myself of course, Shirley, Christopher, Michael, and Elizabeth. When I became national Chairman 1986-87, there were a few signals that disturbed me in my duty. Looking back now I see it was simply ADA becoming a product of the times, liberal and progressive. The same liberal and progressive infiltrations going on in governeent were also going on in profit and non-profit corporations. At one meeting of the ADA national board of directors meeting that I was conducting, a woman director made a motion that the position of Chairman of the Board be substituted by the generic "Chair of the Board." Since it reflected on my position I asked to speak on it. I insisted that I be called Chairman during my term of office. I won that battle but lost the war because ADA reverted to "Chair" thereafter. The use of "Chair" as a position title outside a board meeting is an invention of its meaning. The use of "Chair" begins when a meeting is called to order and ceases when the meeting adjourns. Also in other officer & staff meetings I attended I voiced opposition to the use of human tissue from abortions by ADA in its funded research. I was strongly opposed with the reason that abortion was now legal. There is a principle of organization management called Subsidiarity. This managerial approach follows the logic that methods and solutions are best sought if they first start at the lowest level possible. In other words, "bottom up, not top down." The ADA organization when I left office was bottom up organization because of the One State, One Affiliate plan of organization. Subsidiarity also defuses power, something that power-seekers in organization abhor. Little did I know that after which I returned to Louisiana to continue volunteering at the local level, ADA reverted back to a "top down" plan of management. They did this behind my back after I left because I was not afforded the courtesy of summary activity reports of the ongoing ADA leadership. Even the Louisiana Affiliate kept me in the dark. Before I knew it, all affiliates nationwide were merged into one corporation. I was not asked to that meeting. The Louisiana affiliate corporation died April 23, 1998. In sum, what was once, in my opinion and those of other, ADA was a strong brand in Louisiana. Today, not so. The office serving Louisiana also now serves Mississippi, an arrangement openly presented to the public on the Internet. Money contributed in Louisiana goes to an out of state bank and no public record of donors is shown. Subsidiarity has been lost, and it shows it! I'm too old at the time of this writing to embark on new projects, however, I am of the opinion that diabetes has been poorly served when ADA took local control of its mission and started managing (controlling) it at the national level, a liberal and progressive need. Am I bitter? No, disappointed! You don't mange charities "top down."