FSHD Society co-founder knew the stakes were high to get things right
by Daniel Paul Perez, co-founder FSHD Society
William G. “Bill” Michael passed peacefully at the age of 82 on September 11 after a long decline from Alzheimer’s. Bill was the loving husband of the late Virginia T. “Ginny” Michael, devoted father of Elizabeth M. Hoitt and her husband Daniel and the late William T. “Billy” Michael, proud “Gramps” of Alyssa, Alex, and Amanda, and loving brother of Ronald J. Michael and his wife Mary of Natick.
Bill was a graduate of Natick High School, class of 1958, and Boston College, class of 1963. He was a CPA and managing partner at Russell Brier & Company a tax and accounting firm in Boston. He was a highly ranked and accomplished chess player.
Many of the current FSHD Society board members, advisors, staff and the public it serves may not know Bill or be aware of the key role he played in the founding of the FSHD Society.
The FSHD Society began in early-1991 after a group, including Bill responded to a call by the Perez family for FSHD patients to get together and advocate for themselves. Our goal was to take matters into our own hands, work for ourselves and make sure accurate information about the disease would be made available to all. Bill was there along with his wife Ginny and son Billy. I was there with my parents, Carol and Charles Perez.
As a group we were then and always have been profoundly dedicated to helping affected individuals. There were three co-founders of the FSHD Society along with outside counsel R. Morgan Downey. Our Corporation document required a minimum of three officers – Chairman, Vice-Chairman and Treasurer/Secretary. I was Chairman, President and CEO, Stephen Jacobsen, PhD was Vice-Chairman, and Bill Michael CPA took on the role of Treasurer/Secretary. Bill was the third co-founder and served as the Society’s first Treasurer from its inception until his retirement in 2014.
At the outset, the Society was an all-volunteer organization completely staffed and comprised of non-remunerated individuals who either had the disease or had an affected family member with the disease. We all had full-time jobs and as there were no funds, we donated our time and resources with the intent of accomplishing the purposes outlined in our mission statement — understanding, treating and reversing the course of the disease. We all understood that the stakes of creating a viable, well respected and sustainable Society were high. Succeeding or not-succeeding had a very palatable real life and death quality to it – and to this day still does. We were all meticulously detail oriented and involved in the fabric and origins of FSHD research and very excited and interested to keep abreast of developments and roadblocks.
A consummate human being
Family was very important to Bill and he brought a warm sense of humanity to a family that struggled with one of the most severe cases of FSHD I have ever seen. There was nothing uncomfortable or charged in Bill. He had a deep appreciation of people and their beauty and intellect. He understood who he was as a man and he never complained. He was kind, compassionate, caring, deeply aware of others feelings and understood the impact of simply listening to what they had to say.
Bill had inclinations to make the world a better place. He studied systems carefully; he would make notes and keep close track by old-school method handwritten longhand on oversized bookkeeping and accounting tally sheets. He was an excellent CPA and knew how to gain wisdom from experience, hours and hours of mistakes, and trial and error. I was fascinated with all the things that he did. I loved his stories and he was an excellent teacher and utterly patient with me as I would go through every detail of every aspect of the Society’s finances, bookkeeping, audit, cash flow, financial statements and non-profit tax and regulatory discussions. If either one of us did not have an answer for a business matter in front of us – we did our due diligence and sought expert advice and counsel. We enjoyed our discussions and the process of reconciling of whatever the issue was. He was an avid reader and suggested excellent titles that contributed to who I am today. We often would take a breather from the intensity of the work; stumbling on a word or concept and pondering its etymology and proper use and context. It was a nice complement to my scientific curiosity and technical background.
Bill was always supportive, he was ever present at every event that marked the Society’s high and low points, a quiet comforting presence that we will miss. His stability and emotional constitution were exquisite – and we all relied heavily on his strength. Bill was a native of Massachusetts – the real deal, a product of Boston in its heyday – he spoke with the hard local accent where ‘ar’ becomes ‘ah’ and “or” becomes “aw.” He knew the history and lay of the land. His modest corner office was located in the heart of the city’s financial district and overlooked one of its most historic squares. Often, the windows were open and you could hear the sounds of the city below. It was filled with interesting chess pieces, chess clocks, sports memorabilia and photos of his family. His networks were extensive and he had access to resources and rubbed elbows with Boston Brahmins and influential people in the Boston area. He was loyal to people and things that he valued.
Keeping the faith in memory of his son Billy
As mentioned, Bill’s son Billy Michael attended the initial meetings that led to the formation of the FSHD Society. Billy was diagnosed with infantile FSHD at age three, after having had weakness for several years, and, although he was able to participate in Little League as a young boy, he needed to use a wheelchair by age 10. The severity of his FSHD tested Billy’s courage, faith, ability to love, maturity, resourcefulness and wisdom early in life and in a way that few people ever are. He was accomplished in computers, an avid collector of sports and other memorabilia, and interested in current events.
In late 2004, Billy died at age 35 at home with his family. I remember standing alongside the open casket with Bill at Billy’s funeral with an overwhelming feeling of present day failure and future reality. Despite the enormous impact of his thirty-five years of caretaking and the horror of the loss, Bill recognized we did not yet have the answers we needed and stuck with the Society and continued on in our search for answers. I was so glad that he did; and that he kept his connection to his son whom he loved dearly though the Society and its auspices.
Six weeks after his son Billy’s death, Bill would travel to Bethesda, Maryland with his wife Ginny and his daughter Beth to testify as Treasurer and Board Director of the Society ‘On Personal and Family Factors, Multi-Generational Aspects of FSHD and Infantile FSHD (In Memory of William T. Michael)’ before the National Institutes of Health (NIH) Workshop on the Burden of Muscle Disease at the NIH. At that meeting he powered through saying: “As I think of my son, I would like to tell you the ways FSHD impacted him, of the ways FSHD impacted our family, and to relay to you the medical, social, psychological, and developmental impacts on his life and on others involved in his life. I call this the collateral damage. I have provided the time line chronology and have divided Billy’s life into five phases for the purpose of this discussion.”
First phase: Age 6 months to 3 years from onset of the initial signs, with worry and uncertainty to the diagnosis.
Second phase: Age 3 to 11 from the diagnosis to the inability to walk.
Third phase: Age 11 to 23 years from wheelchair years of mobility to wheelchair immobile.
Fourth phase: Age 23 to 32 from the gastrostomy to the tracheostomy.
Fifth and final phase: Age 32 to 35 from bedridden to death.
Bill strongly felt that his work here was to identify opportunities to help patients such as his son, caregivers such as himself and his family, and medical professionals involved with families. He freely shared his family story with the hope that it allowed medical scientists to understand more, to offer help now with resources and solutions and continue to seek a treatment and cure. In fact, it was this hope that made him endure the pain that went with retelling the course of his son’s life.
From the point of view as of one of the Society’s three co-founders, “Journey of the Magi” by T. S. Eliot comes to mind with its emotional intensity, hues and themes. We set out to solve FSHD and build a worldwide and global research and clinical community. Against enormous odds, alienation, regret and a feeling of powerlessness we have acquired our initial destination of complete understanding what causes FSHD, though not always finding the entire information we needed treat and reverse it — and so we continue.
With deep gratitude for Bill Michael, thank you for your service and tremendous contributions to the FSHD Society and to the hundreds of thousands of individuals living with and affected by FSHD. Vaya con Dios and until we meet again.