Why Mary is interested in KS&A’s mission and cares to serve as Executive Director because…

Working arm-in-arm with KS&A’s inspired Board and committed staff is like a dream come true for me.  I’ve spent many years working with start-up and fledgling non-profit organizations of all kinds, helping them to realize ambitious and compelling visions.  I now look forward, as Executive Director, to putting all of these “lessons learned” to good use at KS&A.  That’s why I could not be in a better place professionally or personally right now.  And that’s why I am so excited by the prospect of all that we can create together to empower the unique and extraordinary differences of individuals and families living with X and Y chromosome variations.

So where did I come from, and how did I get here?

I earned a Bachelor’s Degree from the University of California at Berkeley and Masters Degree in Social Work (MSW) from the University of Maryland, and have traveled the world (literally) with various Peace Corps, adoption, education and other non-profit initiatives. 

In 1996, I was recruited as Executive Director of an organization known at the time as the Alliance of Genetic Support Groups, where I served as the first full-time professional staff member.  Together with the board of directors, part-time volunteer staff and founding director, I worked to transition the Alliance from its courageous and visionary founding status toward realizing its fuller potential as a mature nonprofit organization.  In 2000, in recognition of our success, we renamed the organization the “Genetic Alliance.” And, in what in retrospect now seems like the blink of an eye, over seven incredible high-paced years and with a dedicated group of board and staff, we grew the organization into a coalition of more than 600 genetic lay advocacy organizations (including KS&A) and international prominence as the most important genetics consumer organization.  In the process, we went from a budget of less than $300,000 to budgets in excess of $1,000,000 annually, and an endowment of more than four hundred thousand dollars from which to increase our services and magnify our impact on behalf of our membership.


In December 2003, I gathered up my courage and said good-bye to the Genetic Alliance.  Quite frankly, I realized that I was in need of new challenges, closer to my personal passions and tapping into my love for start-up organizations.  And I trusted that new doors and possibilities would open up as the old ones closed.  So I announced my decision to resign as executive director and to seek out new challenges in the disease advocacy community.

Now, looking back, there’s no question that Robert Shelton, KS&A’s chairman, was a big part of my decision to follow new horizons.  Back in October 2003, Robert came to the Genetic Alliance to talk with me about KS&A’s future vision.  He laid out a blueprint for how KS&A, building on the solid foundation provided by Melissa Aylstock and so many others, could grow into the pro-active, inclusive, financially strong and capable organization so desperately needed by the X and Y chromosome aneuploidy communities.  I’ll never forget the sense of inspiration and excitement that came over me as Robert’s tall shadow faded from the conference room.

Why is KS&A a good home for me, and a good match for us all?

Simply put, I want to be part of a group that will make research, medicine, support systems and policies better serve the needs of those with X and Y chromosome variations.  No one should have to go through what so many families do when they find out that their son or daughter has a “sex chromosome abnormality.” Too often the doctors don’t know what to say or where to refer one for follow up.  Information at that point has to be helpful and relevant or it just creates a secondary problem on top of the surprise diagnosis.  People need an organization like KS&A to turn whom they can turn for support, information, resources, direction.  People need knowledgeable and sensitive program coordinators – people like Paulette, Zell, Leslie and Jill – to help sift through the test results, point them in the direction of relevant research and other information sources, make sense out of it and help us come up with a roadmap for the future.

There’s an essential learning curve with respect to X and Y chromosome variations, and most people receiving the diagnosis of these little-known and frequently mis-diagnosed conditions start at the bottom and only slowly but surely began to put things into context.  We learn that we all walk around with imperfect genomes.  In fact, scientists at the Human Genome Project estimate that everyone has between 8 and 40 genetic mutations.  We learn that, considering the cards that nature deals all of us, receiving an extra X or Y chromosome can be a relatively benign condition.  We learn that there is tremendous variability of expression and impact.  We learn that the personality traits of someone with an uncommon number of X and/or Y chromosomes may, in some persons, contribute to their propensity to be empathic, perceptive and engaging.  We learn that while X and Y chromosome variations are fairly common (probably about 1 in 500 live births) it is rare that health professionals understand, with any degree of accuracy or confidence, the implications of such conditions.  And we learn that medical science, research and education have largely overlooked these conditions in terms of developing better pharmacologic and early identification and intervention treatments.

These are some of the reasons why I called Robert, soon after I went public with my decision to leave the Genetic Alliance, and to offer my services on a part-time, volunteer basis.  Looking back, I never imagined that my offer would eventually translate into appointment as KS&A’s Executive Director.  But I’m thrilled that it did!

Looking with optimism to the future...

I’ve already admitted to my excitement and commitment.  I also have to confess to some degree of trepidation, knowing that expectations and need are so high and knowing that with my current family situation (85 year old mother), my present commitment is limited to a part-time, volunteer basis.  However, I take heart in the fact that KS&A is powered by impressive ranks of energetic and skilled program coordinator volunteers and committed and active Board members who currently provide so many services to the public and to members.  I want to celebrate and strengthen our volunteer activist culture and will be looking for new faces, and needed skills and other resources, to multiply what we can do on a part-time basis and to help us in meeting these key capacity-building challenges:

• Growing Our Membership – becoming an inclusive and collaborative community through outreach to those with a stake in X and/or Y chromosome variation issues, creation of new alliances with other XXY, XXX and XYY organizations and in establishing a research and public health presence for KS&A.
• Enhancing KS&A’s Services – building specific educational and informational services that can be accessed by telephone, email, a technology-enhanced website and face-to-face meetings that build awareness, overcome intolerances, promote improved scientific understanding and medical treatments through research and data collection, and that will realistically foster discovery of new and better ways to treat these conditions and truly empower our members.
• Establishing Financial Stability – building the financial engine to power membership growth and the enhancement of services.

In December 2003, one door closed for me; and in February 2004, another door opened up wide and welcoming.  And now here I am sharing my past and my passions, my hopes and objectives, and counting the days until KS&A’s next conference.  Whether at one of these events, or simply by telephone or email, I look forward to meeting as many of you as I can so that together we can make the world a better place for the extraordinary individuals and families living with X and Y chromosome variations.