ANOTHER AWARENESS DAY -MAY 15TH

My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.

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I am learning ….

I am already shaking. The clock strikes 10 and I spot his car. I quietly leave. I don’t want the chorus from my boys . I introduce myself and tell him I am nervous. (I am very nervous). He smiles. We begin. […]

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Fly For MPS!

Raising awareness for Hunter Syndrome (MPS type 2) is always something I am happy to do. Raising awareness costs people nothing but time, sadly time isn’t something many of those living with MPS have. I was asked to write a little piece […]

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Imagine ..May 15th

If you are a parent reading this, or an aunt, uncle, grandparent, cousin, sibling, friend, school teacher, a GP, a nurse, a doctor or even a pediatrician I want you all to come with me on this imaginary trip. It’s not a […]

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**Guest Post by Sally** #mpsawareness

  In 2015 our family had no idea that May 15th was MPS Awareness Day. We were lucky. Most people have never heard of MPS (mucopolysaccharidosis). Why would they? It is not the rarest of diseases, but rare enough to be described […]

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