Robert is interested in X and Y chromosome variation because…

As part of KS&A’s 2005/2006 Board nominations and elections process, all candidates for officer and director positions were asked to comment on why they were interested in X and Y chromosome variations. In response, Robert stated:

For a number of years before learning there was such a thing as X or Y chromosome aneuploidy, I had been thinking about the differences between men and women, and how the fact that we live in a pervasive patriarchal discourse may limit mankind’s potential by constraining a male’s perception of reality as well as inhibiting a woman’s ability to usefully describe what she perceives in words. Thus, when my wife, Leah, and I received a pre-natal diagnosis of 47,XXY for our first child in 1998, one of my first thoughts was that this diagnosis represents an extraordinary gift; and I today believe this more than ever.

Leah and I are blessed with an incredible 7-year old son, Adam, who is 47,XXY, who’s differences we celebrate and endeavor to find ways to help him appreciate and mature, and who’s challenges we face with open eyes and work diligently to minimize or avoid.

Adam (6 years old) Adam (7 years old)

For these reasons, in addition to my earlier philosophical musings, I have a deep personal investment in helping to advance research and treatment for all persons affected by X and Y chromosome aneuploidies. I have had an opportunity to meet a significant number of adults and children with these conditions, as well as their families and many of the top reseach scientists, clinicians and educators who work with them, and from these interactions have gained a richer appreciation for the challenges as well as the potential of boys, girls, men and women with these conditions.

I continue to believe that there is reason to celebrate the unique qualities these individuals possess, and am convinced that an organization such as KS&A is essential to serving this population, to address support and education needs as well as to advance a research, treatment and legislative agenda that no individual can do on his or her own.

Published on Feb 04, 2006 at 10:41 PM
Last updated on Apr 01, 2006 at 02:16 PM