A HUGE thank you to those who fought for kids with IRF2BPL by donating and sharing our CARE ABOUT RARE videos and hashtags. While we didn’t meet our goals, we still raised some good money for Yellow for Yiannis and hopefully increased awareness of this devastating disease. Greg and I and Angela, Chris, and Yiannis want to thank you all with everything we are for the love you showed these kids through this project. We will never forget what you all did!
More to come, including the winners of the Lives we were offering as incentives. I love this community and every single person who helped as they promised to. Trust me, we all noticed who joined forces with us and it made a very big impression on us. ❤️
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IRF2BPL is an ultra-rare, progressive, ultimately fatal neurological genetic childhood disorder. Kids with IRF2BPL lose the ability to walk, talk, swallow, eat, and breathe. Most don’t live past 10. Some say IRF2BPL is “too rare to care about,” but we in the indie music community care about rare. And so do their parents, caregivers, siblings, extended family, friends, teachers….This is a race against time to fund a cure. So please donate anything you can — even a single dollar counts more than you know. Share this far and wide. And show the world that you care about rare, too.
In summer of 2022, just shy of their son’s second birthday, Angela and Chris Papazoglou received the worst news a family can get: Their beautiful Yiannis has IRF2BPL. Imagine finding out that your child has a fatal disease with no cure — and then that it’s so rare only a few dozen people have heard of it. Instead of giving up, the Papazoglous started Yellow for Yiannis, a 100% nonprofit organization dedicated to researching IRF2BPL and helping the families affected by it. They’ve already helped kids with IRF2BPL get custom car seats, access medical care, and receive other necessities to make their lives a little easier. Now this remarkable family, and all the families they help, need help…from YOU!
The death of even one child is catastrophic. No child leaves this world without diminishing the light of everyone who loves them. Please donate, share, and tell the world to care about rare!