Rare and Far from the Shallow Now


Defined as “seldom occurring or found : uncommon.”

When #rare is your normal, you seek comfort in #gaga and #shallow from #astarisborn to show the world what rare can do.  An #oscar performance so rarely gains so much interest and attention that it must be uncommon and it must be #rare.

@BradleyCooper and @ladagaga – an exceptional performance like yours and a speech from @ladygaga reminds our family to keep fighting.  A reminder of our journey is perfect timing as we near Rare Disease Day, 2019.

Rare Disease Day is held on the last day of February each year to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Building awareness of rare diseases is essential.  Statistically, 1 in 20 people will live with a rare disease at some point in their life.  Many go undiagnosed and few have a cure.

Our rare is difficult.  Our rare is painful.  Our rare is far from the shallow now…

To quote @ladygaga “What it’s about is not giving up.  If you have a dream, fight for it.  There’s a discipline for passion: it’s not about how many times you get rejected or you fall down and get beaten up, but how many times you stand up, and are brave and you keep on going.”

To all those who keep on going in search of a cure and awareness for the rare diseases they face; stand up and keep on fighting!

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