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Emmett's Fundraiser

Emmett was born April 2016 with a mutation in his PIGA gene which, we would later find out, is a Congenital Disorder of Glycosylation (CDG). This devastating metabolic disorder has, from birth, impacted his ability to eat (he is g-tube fed), his breathing and all aspects of his development. He was also diagnosed with infantile spasms at an early age and has intractable epilepsy, another likely byproduct of his glycosylation disorder. And unfortunately, there is no treatment for this extremely rare disorder.

Ever since getting his diagnosis, we have been researching ways to both improve his quality of life and find a treatment for his disorder. We’ve made progress in getting that research started, but we need your help to raise money to further advance our research and to raise awareness for CDGs as a whole. We are partnering with CDG Care, an established 501(c)3 dedicated to CDG advocacy, support and research, and together, we thank you so much for your support!

To learn more about Emmett’s journey, visit his blog at: https://emmettjordanblog.wordpress.com/. There is also a page that describes the research projects we're exploring, now and in the future: https://emmettjordanblog.wordpress.com/piga-research-projects.

About the Shirt
We picked soft, tri-blend shirts and created the design with a yellow font because, as someone with Cortical Visual Impairment (CVI), Emmett like bright colors on a dark background. One link will take you to the two adult shirts available, the other will take you to the toddler and baby shirt/onesie available.

Campaigns

PIGA-CDG Research (Adult Sizes)

Help us raise money to find a treatment for PIGA-CDG!

250
items sold
$10,790
raised
Campaign
Ended
PIGA-CDG Research (Toddler/Baby Sizes)

Help us raise money to find a treatment for PIGA-CDG!

56
items sold
$1,210
raised
Campaign
Ended