Story of Sophia at The Quantified Self
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Karen Herzog and Richard Sachs of Sophia's Garden and Valley Design Group were the last to speak. They stood before a hushed audience at the last Bay Area QS Show&Tell, telling the incredible, moving story of their late daughter Sophia. Sophia had Niemann-Pick Disease Type A, a rare lysosomal storage disease. Karen and Richard coordinated her care themselves, keeping detailed collaborative records of Sophia and even running their own n=1 clinical trial. The smooth functioning of Sophia's extensive, international community of care and her very life depended on accurate documentation - one small thing that went wrong could mean that she would die. Watch video of Sophia's inspiring story at http://www.kk.org/quantifiedself/2010/09/the-inspiring-story-of-sophia.php
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Story of Sophia at The Quantified Self
- 1. Lifeloga collective self Herzog & Sachs
- 5. Grief? Religion? Family? Alternative Medicine? Research? Hospice? Resignation? Tranquilization? Friends? Institutionalization? Living in the moment? Financial Stress?
- 12. Integrative Medicine and Experimental Pharmacogenomic Therapy in a Child with Niemann-Pick Disease (NPD), Type A Sylvestre Quevedo, MD Osher Center for Integrative Medicine University of California School of Medicine San Francisco, California, USA Center for Integrative Medicine San Jose, California, USA Sophia’s Garden Foundation Scientific Advisory Board Palo Alto, California, USA Collaborator: Richard Ellson, Chair, Scientific Advisory Board, Sophia’s Garden Foundation
- 13. Case Study of NPD Type A
- 25. Integrative Medicine and Experimental Pharmacogenomic Therapy in a Child with Niemann-Pick Disease (NPD), Type A Sylvestre Quevedo, MD Osher Center for Integrative Medicine University of California School of Medicine San Francisco, California, USA Center for Integrative Medicine San Jose, California, USA Sophia’s Garden Foundation Scientific Advisory Board Palo Alto, California, USA Collaborator: Richard Ellson, Chair, Scientific Advisory Board, Sophia’s Garden Foundation
Editor's Notes
- Looking for Meaning Beyond Work• I was in my late 30’s and had defined myself by my work in architecture, design and Web technologies.• much as I enjoyed the work, I found myself looking for deeper meaning in my life.
- Diagnosis NPA (Slides 4 – 5)• Sophia wasn’t meeting her growth milestones and was having repeated infections, in medical terms a “failure to thrive.”• After 3 months of painstaking tests, she was diagnosed at 10 months with Niemann-Pick Disease, Type A, a rare genetic, metabolic condition. She was one of 8 to 10 children at any given time in the world with this condition. Her life expectancy was 2 to 3 years. • Needless to say, my worldview was disrupted and Sophia and our family started down a different path.
- Diagnosis NPA (Slides 4 – 5)
- Recordkeeping: The Icon of Empowerment and Community (Slides 8-11)• One of the main ways we took charge was to track information— inputs, outputs, chemistry and care activities— and it wasn’t that easy to get everyone to do this. • After trying and failing to teach the nursing team how to use Excel (wish there was Health 2.0 tools at the time!), the team fell in love with using physical sheets in a binder with a photo of Sophia on the cover. • The binder, open to all, became a symbol beyond what was written in it. As the binder was passed from one caregiver to the next, it became an icon of empowerment, community and hope.
- Recordkeeping: The Icon of Empowerment and Community (Slides 8-11)
- Recordkeeping: The Icon of Empowerment and Community (Slides 8-11)
- Recordkeeping: The Icon of Empowerment and Community (Slides 8-11)
- Prayer Flags for Sophia (Slide 15-21)• The prayer flags provided a way for individuals to express their feelings when words alone could not suffice. • The collection of flags hung in our home gave us a constant, visible expression of the intentions of hundreds in our community. • People made flags in our home and at work, sent them from other places, and brought them on their travels abroad, increasing awareness of Sophia, our family and the larger community.• Flags waved as symbols of solidarity for many separated by geography, but bound by common interest, intention and compassion.
- Prayer Flags for Sophia (Slide 15-21)• The prayer flags provided a way for individuals to express their feelings when words alone could not suffice.
- Prayer Flags for Sophia (Slide 15-21)• The collection of flags hung in our home gave us a constant, visible expression of the intentions of hundreds in our community.
- Prayer Flags for Sophia (Slide 15-21)• The collection of flags hung in our home gave us a constant, visible expression of the intentions of hundreds in our community.
- Prayer Flags for Sophia (Slide 15-21)• People made flags in our home and at work, sent them from other places, and brought them on their travels abroad, increasing awareness of Sophia, our family and the larger community.
- Prayer Flags for Sophia (Slide 15-21)• People made flags in our home and at work, sent them from other places, and brought them on their travels abroad, increasing awareness of Sophia, our family and the larger community.
- Prayer Flags for Sophia (Slide 15-21)• Flags waved as symbols of solidarity for many separated by geography, but bound by common interest, intention and compassion.