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Disability Advocacy

From 2009-2017, I served on the Board of Directors of FIRST, the Foundation for Ichthyosis and Related Skin Types. FIRST is the only nationwide nonprofit in the United States dedicated to assisting families affected by ichthyosis, a rare genetic skin disorder. On the FIRST Board, I led numerous technology and outreach initiatives, including revamping FIRST’s website, driving FIRST’s renewed role in communicating about medical and scientific developments to affected families, and driving FIRST’s increased social media efforts.

During much of this time, I, along with my wife Jennifer See, ran a (currently dormant) blog about and for the ichthyosis community, “Confetti Skin, Beauty Within”. 

In 2013, I achieved Internet “fame” of sorts when my AMA about living with ichthyosis made the Reddit front page. The linked picture of my foot has been viewed over 168,000 times. 

I’ve given more blood and tissue samples to science than I care to admit, and have even survived surgery in a sketchy airport hotel and on my dining-room table, all in the name of science. I’m grateful to the researchers who worked with me and my family and published a paper about us, “Frequent somatic reversion of KRT1 mutations in ichthyosis with confetti”. J Clin Invest. 2015;125(4):1703-1707.