On Rare Disease Day 2019, I got to join Patricia Weltin, founder of Beyond the Diagnosis, Pawtucket. RI, to unveil this portrait of Amber. She was born with the rare Giant Axonal Neuropathy. This portrait was part of a larger exhibit, sponsored by Beyond the Diagnosis, that features kids and young adults with genetic disorders and other rare diseases. Each portrait was beautiful and inspiring in portraying the reality of these kids. That is, none are defined by their diagnoses. All have a beauty in every sense of the word. The unveiling was held at NIH on February 28. Credit: NIH
I hope this not supported by diversion of funds from improving diagnosis, treatment. I want failures redressed ASAP by productive medical investigation. Isn’t that the NIH’s mission? What Congress has appropriated the NIH our tax dollars for? Not PR spectacles.
Thanks for your comment.Beyond the Diagnosis is a non-profit organization. According to its website, all funding to support the Beyond the Diagnosis art exhibit comes from corporate or private patrons.
I’ve had the honor of viewing this exhibit at the Broad Institute while I was visiting the MIT campus to discuss our daughter’s rare disease with researchers. The portraits not only show each person’s beauty, they connect a living person to each rare disorder. These portraits have been exhibited in numerous research institutions where they inspire the people who carry out the work required to understand disease pathology, identify treatment targets and translate research into treatment.
I hope this not supported by diversion of funds from improving diagnosis, treatment. I want failures redressed ASAP by productive medical investigation. Isn’t that the NIH’s mission? What Congress has appropriated the NIH our tax dollars for? Not PR spectacles.
Thanks for your comment.Beyond the Diagnosis is a non-profit organization. According to its website, all funding to support the Beyond the Diagnosis art exhibit comes from corporate or private patrons.
I’ve had the honor of viewing this exhibit at the Broad Institute while I was visiting the MIT campus to discuss our daughter’s rare disease with researchers. The portraits not only show each person’s beauty, they connect a living person to each rare disorder. These portraits have been exhibited in numerous research institutions where they inspire the people who carry out the work required to understand disease pathology, identify treatment targets and translate research into treatment.