Star Shining Bright

I am in awe.
 

Star Bobatoon

Star Bobatoon talked to our scientists and parents on Wednesday. And - this is one of the best parts - Hurricane was there! He punctuated his mom's talk with running commentary: "um-hum", "yep", no way", delivered with just the right amount of dryness. He was interested enough to pay attention but teenager enough not to pay too much.

And then there is Star. She - well - shone! She engaged the audience - we were yelling out 'I hate muscular dystrophy!' like our lives depended on it - like Hurricane wanted to in her book, "I Hate MD - Loving a Child with a Life Altering Disease".

I want to pause to thank the parents that came. One of my old friends from a decade or two ago, Adele, was there with her son, who is planning on studying architecture CAD. (Jason, you'll be fabulous! Adele it was wonderful catching up with you.) And the folks there from the Muscular Dystrophy Association, Tricha and Annie - a new friend and an old.

We heard about the 'Star Principal'. If you can remember S T A R you can benefit.

S for Start Anew
T for Take time to live, laugh and talk about it
A for Accept the tears and ask for help

R for Replenish your spirit

From left to right, Aditi, Jack and Yi-Wen. GenMed-ers enjoying a food moment.

The cool thing was the reaction from our scientists. There was standing room only. They were riveted to her every word. It would not be an exaggeration to say that 20 people came up to thank me for having her here.

And listening to Star, seeing her words light up the faces around me, made me realize: while we parents wait for science to catch up to our hopes to save our sons, it is as much our hopes that sustain them when they are pipetting at midnight or eeking out a bit more for supplies, or wondering if this 'one more grant' they're writing, could be the thing that makes catching up possible.

Star, thank you for sharing your hope.