Super Perry and Rare Disease Day

Monday, February 29, 2016
In case you missed it, today we celebrated Rare Disease Day. Though at HudsonAlpha and the Smith Family Clinic for Genomic Medicine, everyday is really rare disease day.

We have had a little something up our sleeves for that was made public this afternoon in a press conference at the clinic. The unveiling of the Hero Fund, thanks to the overwhelming generosity from an anonymous donor, that will provide funding to help underserved patients receive genomic medical care for many years to come. Along with the announcement was a call for support from others to contribute to this cause.

Genomics is expensive and insurance frequently does not pay for genome sequencing even when it is has a high likelihood of providing a diagnosis for a critically ill patient. This is a landscape which will hopefully change soon, but until then access has been and is a real problem for many patients. This is one step towards alleviating that burden.

The branding of the clinic is around super heros, helping our patients whether they are children or adults find their diagnosis, their secret identity. If you surf the internet with any frequency, Perry has likely graced your screen in a banner advertisement for the clinic. We chuckle at how often we see his sweet face in the margins of our computers. Like this one, while I was innocently listening to pandora radio...

Our communications team wanted some cute super heros to be there for photo ops at the press conference today, and I happily volunteered our cute little red headed super boy. Standing still by a podium while people talk is not terribly entertaining to a kid, and he and his good buddy Olivia were a little squirrely, but that is real life with 3 year olds. They looked super cute though and played their part. One day he will realize the significance of the event. lol.

Happy Rare Disease Day! Here's to more diagnoses, treatments, and advocacy for those living with rare disease...which collectively are not so rare.

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