Our very own Susan Hagemeyer, #TAF board member, was featured in Toledo Parent! “Words Matter” discusses how the words we use matter when discussing disabilities and rare diseases. 
Here is an excerpt: “Susan Hagemeyer, an active board member of the Avalon Foundation who has a rare form of hypophosphatasia (HPP), feels that the most important thing when it comes to using correct terminology is to simply ask the person with a disability what they would prefer. It’s especially important, she says, to be aware of how words can affect kids with disabilities.”

‘I think that the term ‘disabled’ diminishes all the things that somebody can do, even if you do have a disability,’ says Hagemeyer. ‘That was one that always stood out to me a lot because I know I’m perfectly capable of doing many things. When you’re younger, you put so much meaning into everything you hear; it can be easy to let it define you.’
As an advocate for children in the rare disease community and someone who has lived with HPP her whole life, Hagemeyer thinks most people have good intentions. She says the most important thing is ‘not to avoid the disability altogether, but don’t make it the main topic of conversation, either. Get to know them as a person.'”
Find the entire article on Toledo Parent online and in print at Toledo restaurants, libraries and gas stations!
#KidsCaring4Kids #TheAvalonFoundation #KidsWithRareDiseases #Nonprofit #Hypophosphatasia #SoftBones #HPP