Changing the ignorant narrative

Changing the ignorant narrative

As a rare disease family it occurred to me quickly that the rest of the world is ignorant. Let me clarify that. You aren't necessarily a malicious person if you are ignorant. It just means that you may not be aware of how harmful some of your statements can be. Our family has experienced a [...]

Motivation & ignorance – a fuel to be reckoned with

Motivation & ignorance – a fuel to be reckoned with

Dedicated to those who stoke my fire - Thank you for continuing to remind me everyday why what I am doing is so important. Thank you for being my motivation-Mom of a mountain mover Something that I find incredibly difficult when it comes to Beckwith-Wiedemann Syndrome is figuring out other peoples reaction to Owen’s physical [...]