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Kemp Battle - Secretary Managing Director, Tucker Capital Corporation
Folklorist and Writer
Kelly Edwards, PhD Associate Director, Room One
University of Washington School of Medicine (emeritus)
Shantanu Gaur, MD - Treasurer Physician, Entrepreneur
Co-founder, SGL Medical
Usama Malik, MBA Founder and Managing Director,
InnoAction Advisory Services
Sharon Terry, MA - PresidentExecutive Director, PXE International, Inc.
Ashoka Fellow


Former Members of Genetic Alliance Board

About the Council

Genetic Alliance engages individuals, families and communities to transform health. This requires that we as an organization understand what it means to transform systems, dissolve boundaries, create and sustain open space, and promote the process of openness. We understand that to transform systems, we must start with our own, beginning with our very person. Such work calls us, both personally and professionally, to explore the deepest truths about ourselves and the systems we impact.

The name Board, for example, is a descriptor that no longer resonates with the truth of our organization. The overarching body for Genetic Alliance must create space that supports and manifests visioning and transformation at the deepest level. Genetic Alliance requires a structure that goes beyond governance, towards a deeper stewardship that serves openness and supports the rigorous process of self–discovery (awareness) required during our decision–making. We believe that through the sharing of self we discover the greater Self, the communal We. The traditional, institutional view of governance covers the process of decision–making and the process by which decisions are (or are not) implemented. At Genetic Alliance, in order to meet our mission, we need a more in–depth measure of governance that also demonstrates the internal process by which decisions are explored and how we collectively discern, in openness and clarity, the highest good for all concerned. Good governance has long celebrated essential characteristics. According to the United Nations (positioning itself as an acclaimed model), good governance is participatory, consensus oriented, accountable, transparent, responsive, effective and efficient, equitable, and inclusive and follows the rule of law.

Our Council recognizes that stewardship—of self, relationships, and community—calls each of us to deep internal and external communion. Mindful, compassionate stewardship—being home to the whole as we continually listen to "what matters" from the millions of people who rely on our work—is our deepest calling as a Council. All sound stuff, indisputable in intention. These characteristics, however, are easier to describe than to model. By what processes is participation, equity, or inclusiveness assured? When is consensus established? What processes ensure we are accountable, transparent, responsive, effective, and efficient? How is it that many deep truths and profound decisions have emerged from processes that initially defied good governance?

Good governance assures that corruption is minimized, the views of minorities are taken into account, and that the voices of the most vulnerable in society are heard and considered with equanimity in decision–making. It is also responsive to the present and future needs of society. What does "taken into account" mean? Has there been enough openness, enough self–discovery, to allow the majority to do more than hear the minority (or the most vulnerable)? Has the majority truly identified with the minority? Isn't good governance evident when the very distinction between minority and majority disappears?

As we explore our ideas of governance at Genetic Alliance, we must weigh the language of traditional models to make sure that it is congruent with our learning. Where it is not, we must be bold enough to toss out old words in search of those that convey our true intentions. In the face of the suffering to which we are present, we must be insurgents.  And so, we have collectively discerned that it is time to transform the Genetic Alliance Board into a Genetic Alliance Council.

Genetic Alliance Council

Our Council recognizes the insurgency necessary to fulfill this mission. Openness is our product and process - the most critical ingredient of our culture, and one way we manifest this is through the work and service of the Council.

Principles of the Council include the following:


  • We convene and hold space for the pursuit of truth.
  • We hold this space without judgment.
  • We actively search for, recognize, respond to, and release the essential core in the other.
  • We express through mindful presence the love we hold for ourselves and others.
  • We convene with no agenda, externally or internally. 


  • We are awake to what is real and true in the moment with ourselves and with each other. We listen deeply to hear the heart and soul of another as well as the system within which we are functioning.
  • We practice full presence to enable us to examine another's point of view, decision, question, or answer for its underlying truth and insight. We aim to identify with that person so that we might see the WE. 


  • The Council recognizes that all content, if truly followed and evaluated, will lead back to core principles and values. We believe that all content is but an example of a deeper truth so we actively, consistently, and humbly seek that truth in order to increase personal transparency, maturity, and wisdom.


  • The deliberations of the Council are freely available and directly accessible to any who show interest.
  • Most explicitly, all work done in the Council is shared with staff. This serves to advance the growth of Council as they engage with Staff and to deepen the Staff's engagement in all of these principles. Finally, it leads to the most impactful manifestation of Genetic Alliance in our Community and in the world.


  • We value the fact that we are no longer able to know the outcome of any given process and believe that what will emerge is better than anything any one individual might have planned or imagined.
  • We are committed to discovering and releasing potential energy within individuals, relationships, organizations, and communities and will not stop that energy in search of protecting the status quo.


  • We commit to being a transformational presence in all interactions. We understand that to embody the fullness of presence we must practice and experience it. By committing to and integrating it for ourselves, the Council accelerates its ability to serve our Community.


  • The Council will always strive to identify with the diversity of our Community. We recognize that the one absolute requirement of successful Council is balance.
  • Diversity goes beyond representation, to the deeper choice of identification as described above.


  • Learning takes place in real time: the visioning process is one of discovery, and it unfolds as the Council conducts its business.
  • Collaboration comes from the participation of every member of the Council. When anyone is made Other, when any are separated and judged, the Council, the organization, and even truth itself are in jeopardy.


  • We actively, consistently, and humbly assess the truth about ourselves by honing skills of self–assessment and inviting truth–telling from others, in order to increase personal transparency, maturity, and wisdom that may then be shared through one's being in the world.
  • Our first accountability is to embody transformational leadership within our own lives and then within our Community.
  • We welcome the learning that comes from discernment and are always willing to apply the learning first to ourselves by asking, "How is this learning true of me?"


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