Sweatpants created for our friends at Yellow for Yiannis. A black sweatpant printed with yellow vinyl print "RARE" on leg. Available in youth and adult sizes.
20% off proceeds from purchases of this sweatshirt will be donated to Yellow for Yiannis.
About the organization:
Yellow for Yiannis was created with two very big missions. Funding and finding a cure for IRF2BPL NEDAMSS which is an ultra rare fatal progressive neuro degenerative genetic disorder and helping families obtain equipment and the treatment that we are hoping will cure our children. IRF2BPL is a fatal progressive neuro-degenerative disorder.. with no known treatments/cures... YET.. that is where YOU, yes YOU come into play!!
Gene therapy is our biggest contender that we have hope in. We have a remarkable team at Nationwide Childrens in Columbus Ohio, A team in NYC & and in Berlin, Germany.
They are working tirelessly to develop a viable treatment. We are also looking into drug repurposing as well unfortunately, that hasn’t really manifested into anything yet (by way of ALS meds and what not.. we are trying)
Being that IRF2BPL is so ultra rare 40 +/- known cases globally it is extremely difficult to get any sort of funding for our disorder.
Hence why Yellow for Yiannis came to fruition. Our teams however are running out of funding they are running on fumes to say the least.. Thankfully they won’t give up but if we don’t raise substantial funding for them soon we are going to be set back.. which is horrific considering the progressive neuro-degenerative trajectory of this awful disease. We have already lost several children to it which is way too many as is.
