Me with Cath on my left and Mindy on my right.

Going to the Dealing For Duchenne event in L.A.  was completely last minute, and except for wearing a dress that made me look pregnant, not at all showing my recent body transformation, the night was epic. Meeting fellow Duchenne Parents like Debra and Paul Miller, Mindy Cameron, Cath Jayasuria and LeeAnn and Jordan Faeth was exactly what I needed. The love and compassion extended to me were inspirational. That in itself was worth the four-hour airport sleep-over and the $175 dollar ticket to attend. Here in Alaska, I don’t have many other Duchenne families to connect with and, by far, meeting other parents was the BEST!

The Venue was "Snazzy"

The night was full of many wonderful experiences. I also got to meet Green Bay Packers’ Clay Matthews. I asked him if he knew what his support meant to all the Duchenne families. He smiled his big, handsome smile and said, “I am beginning to.” Clay’s signed jersey went for $6,000.00 in the silent auction!

I heard GM’s Global CMO, Joel Ewanick, stand up on stage and say, “LET’S GET RID OF THE DAMN DISEASE!” All I could think of was, WOW, here is a man who gets it and truly wants to do whatever he can. VERY TOUCHING!

But what topped the cake was being on stage with all of us parents holding HUGE posters of our Duchenne sons while Natalia Safran sang “Wonderboy.” Later, when I connected with Natalia on facebook, she told Mindy Cameron and me, “I am ready to help out every year until there is a cure for your boys.”

I am so glad I decided to go. My big take-away of the night was real hope. Every speaker, either touched by Duchenne personally or not, was completely 100% behind a cure for Duchenne. In many ways the event was surreal. Next year I predict Dealing for Duchenne will be triple the size. Will I be there? You just never know. I fly by the seat of my pants often.

Here is more CureDuchenne Dealing For Duchenne News:

-Star Studded Event Raises $330,000

-Clay Mattews on Ellen