Yellow for Yiannis was created with two very big missions. Funding and finding a cure for IRF2BPL and helping families obtain 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. That being said, we have a remarkable team at Nationwide Children’s hospital under the leadership of Dr.Kathrin Meyer in Columbus, Ohio and Dr. Pawel Lisowski in Berlin, Germany.
They are working tirelessly to develop our cure. 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. Nationwide and Pawel will help our children.. however they are completely out of funding.. they are running on fumes to say the least.. Thankfully they won’t give up but if we don’t get 500k to 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.
With our website overhaul every $1 in will be accounted for and every $1 out will be recorded and fully transparent. The split is looking to be 90/10 for research & funding the lifesaving cure/research the other 10 is to be allocated to families that apply/need based transportation to Columbus for example and what not for biopsies and other methods of treatment. Since a lot of what our children are enduring isn’t covered by insurance. We have already sponsored a single mother and her daughter to be able to obtain biopsies (their hometown doctors wouldn't do it because IRF2BPL is so rare..we petitioned and tried for months) Without getting superrrrr clinical...The skin punch biopsies will be cultured in the lab (we chose Kathrin’s at NCH) which will grow and be made into fibroblasts. Which will make it way easier for Kathrin and Pawel to see the similarities/differences within our children’s variants. With these cells and fibroblasts they will also be able to utilize them to trial on IRF2BPL mice and other ways of seeing how our specific variants play out. They are also very much useful in the ultimate goal of gene therapy!!

Thank you very much everyone! We really couldn't do this without your help. Every single $1 adds up and goes a long way in funding the eventual cure for IRF2BPL!

I hope this helps if you have further questions/concerns please don’t hesitate to Angela@yellowforyiannis.org
We are transparent from the get go and always will be.
Thank you so much for your time and consideration. Please help us achieve our miracle!

#yearningtocureIRF2BPL
#yellowforYiannis
#IRF2BPLsucks
#IRF2BPLawareness

Covers for a Cure! By vox + stix!!!!

By Yellow for Yiannis Ltd

Covers for a Cure! By vox + stix!!!!

Benefiting Yellow for Yiannis to cure IRF2BPL once and for all!!