Instigating the consumer movement to reclaim health by creating systems that allow individuals to manage their own data sharing and access preferences in research. Disrupt the translational science ecosystem by fostering collaboration, so that there are no boundaries. Together, we can recognize that when we work collectively, without seeking personal credit, we can make a meaningful difference in the world.

The Genetic Alliance BioBank (BioBank – http://www.biobank.org) was founded in 2003 by leaders in the research advocacy field. It is establishing a centralized biological and data [consent/clinical/environmental] repository to enable translational genomic research on rare genetic diseases. The BioBank works in partnership with academic and industrial collaborators to develop novel diagnostics and therapeutics to better understand and treat these diseases. The BioBank will include a state-of-the-art, web-based informatics core, which is suitable for both research and product development [FDA compliant] studies. The centralized management and infrastructure of the BioBank provides a relatively cost-effective mechanism by which individual advocacy organizations for the first time can pursue sophisticated, novel research collaborations.

Education of patients with pseudoxanthoma elasticum (PXE). Manage consortium of 33 labs.

The Gestalt Practice Library and Resource Center is a curated repository of digital and physical materials that provide a history of the formation of gestalt practice as taught by Richard Price, as well as its ongoing development. This includes documentation of the work and teachers that influenced the formation of gestalt practice such as gestalt psychology, Buddhist practice, Taoism, and holistic approaches to physical, mental and spiritual health. The Gestalt Practice Library and Resource Center preserves these resources and enables engagement with the materials, providing theoretical information and access to experiential exploration.

Directing the Recruitment and Retention Services Unit. Strategizing the best engagement for the CTSI with the participant's needs first and foremost.

Tribal Ground is an organization dedicated to the recognition and celebration of the sacredness of life and death. It is a gathering of people exploring the challenge, potential, and wonder of having a human life and who want to integrate that inquiry in daily practice. It is the congregation of people who study Gestalt Awareness Practice. Tribal Ground now joins Tribal Ground Circle, a consortium of teachers offering programs where these efforts can take root and grow. (Read more.) Here, we can gather to study GAP, practice awareness, and honor life and death through ceremony. Hopefully, the establishment of a community burial ground will someday complete this dream.Gestalt Awareness Practice is a form – nonanalytic, noncoercive, nonjudgmental – derived from the work of Fritz Perls, influenced by Buddhist practice and evolved by Richard and Christine Price. This work integrates ways of personal clearing and development that are both ancient and modern. Developing a greater quality of awareness is the primary focus. In this respect, Gestalt Awareness Practice has a strong relationship to some forms of meditation. This approach is similar to some Reichian work as well, in that emotional and energetic expression and rebalancing are allowed and encouraged.The emphasis is intrapersonal rather than interpersonal. It is explicitly understood that participants are not patients but persons actively consenting to explore in awareness. The aim is unfoldment, wholeness, and growth, rather than adjustment, cure, or accomplishment.To learn more about our new project, please visit Tribal Ground Circle. Go to our Workshops page to see upcoming programs.

Building boundary-less teams of teams - building the WE.

EspeRare is a new Swiss nonprofit foundation, with global reach, focused on accelerating the cost-effective development of unexplored repositioning opportunities for rare neurological and immunological diseases. In partnership with patient organizations, EspeRare addresses the key translational gaps and clinical development challenges, acting as a trusted broker for its pharmaceutical and academic partners, regulatory agencies, public bodies and CROs, to drive effective development and foster access to new treatments for rare diseases patients. EspeRare’s president, Sharon Terry (a pioneer of patient empowerment and citizen health) launched the foundation at the International Rare Diseases Research Consortium conference in April 2013.

Led 500+ amazing leaders of health advocacy organizations in the quest to have US Congress pass Genetic Information Nondiscrimination Act of 2008!

Enabling Kathleen Deignan's music ministry to be shared with the world.

Designed and taught an all day science lab course to homeschoolers, ages 8 to 18. Taught summer classes.

Provided pastoral counseling to students.

Worked with students of all faiths. Was the first woman to preach on Easter Sunday from the Hotchkiss pulpit. Kudos to Lou, the head chaplain for opening the pulpit to me.