Last Night – I found my fight.

Yesterday I flew down to LA for dinner…No this is not a normal occurrence for me..ha ha..But I had the privilege of attending “A Night of Hope” in honor of Baby Hannah’s life.  The Gala’s focus centered around raising awareness for Spinal Muscular Atrophy, a disease I was introduced to just last year, at age 21, even though it is the #1 genetic killer of children under the age of 2.  Seriously?  I became aware of this horrific disease after one of my favorite little baby subjects, Miss Getty Storm, was diagnosed at 4 months.  Though Getty lives with this disease day in and day out, she has changed lives.  She is the reason, one of the very precious reasons, that I am on board to fight.  There is so much hope that we will find the cure for SMA, and last night I knew in my heart that this was what I am supposed to be doing.  So Getty, count me in. We will be fighting till the ugly SMA is gone, and cured.
At the Gala I met Alex and Angela from “The Damnwells”, an AMAZING band, who dedicated their latest album to our precious girl – Sweet Water Child: Lullabies for Getty – I cannot wait to buy my copy.  100% of the proceeds benefit Getty’s family and SMA research.

I cannot emphasize how important the research is right now, we are potentially on the brink of a cure.  That makes me want to fight that much harder.  Below I am proudly standing next to Vincent Gaynor, co-founder of Sophia’s Cure.  His wife, Catherine, and him are fighting with everything they have.  Their daughter Sophia, who is 21 months is fighting the disease just like Getty.  I cannot wait to end this disease.  Watch out SMA!

Me and Vinny from Sophia’s Cure

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