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Friday, March 18, 2011

FFB Dining in the Dark in Orange County

Last night, we attended the Foundation Fighting Blindness Visionary Awards & Dining in the Dark event in Orange County, at the gorgeous Fairmont Hotel.  I was hoping to attend the Symposium during the day, but with the kids, school it was a little difficult to get down there all day.

We always love the meet and greet reception time before.  The great drinks and appetizers, and rubbing elbows with some of the best names of the Foundation and research, are always great.  A few of my fellow Chapter Board Members were there, it’s always nice to see them in a dressy setting, looking fabulous!

I was honored to be asked to be guest honorary speaker for the evening.  We spoke at the beginning, which was great.  My speech followed Corey Haas’ video (below)

When Corey’s video started, we were escorted out.  I told them it would be best if I did not see the video, then have to take the stage in front of 350+ people seconds following the video.  It gets me every time. How can it not?  I managed the speech.  I have talked at previous VisionWalks, Kick off luncheons, our Foundation events, etc.  But I have not given a formal speech in a while.  Troy usually takes the reigns on that one.  He can manage the tears better than I can.

This speech, I was very nervous.  Hundreds of thousands of dollars were trying to be raised.  We were the only non-professional guest speaker, and looking out into the crowd of pharmaceutical companies, doctors, research scientists and the like – can be intimidating!

I was glad to manage the 5 minute terror speech.  Then I was glad to be in my chair, after the speech, with my wine.  The lights went off, and darkness engulfed the room.  I handled this one better than the prior 2 we have been invited to.  No tears, but lots of emotion. 

Thumbs up, a celebratory pep talk before and after the speech from Foundation Fighting Blindness CEO Bill Schmidt and Chief Research Officer, Stephen Rose is always a good thing.  Someone said there wasn’t a dry eye in the room.  I hope I did my son’s story justice, and able to help keep pushing research forward, which is our ultimate goal.

It was not until my drive home that I had phone calls, emails and texts from those who watch the show “Bones”.  The show airing that evening had LCA in the storyline!  Can you imagine.  I don’t follow the show, but a woman is pregnant, and they are testing to see if their unborn child has LCA.  Does anyone know how they find out that the mom is a carrier?  That struck me as odd.  But then again, I don’t follow the show, but am happy to see LCA get some exposure, since it is so very rare.

The full episode can be seen here:

We had a great evening!  My dad and my mom #2 were also invited.  FFB wanted to make sure my parents saw their daughter speak.  How awesome are they?  I truly have a family in FFB.  I adore who they are, what they do, and their outreach with family.  It’s definitely an organization I am tied to, even though we will push forward with our LCA Research and fundraising.  We will always represent, donate, and help FFB with all they ask of us! 

Thank you Foundation Fighting Blindness!  I am honored and humbled to have shared our story on such a special and memorable evening for so many.

1 comment:

  1. Congratulations! My mother and I went to the Dining in the Dark in San Diego two years ago when your family was honored. I still have my journal, you have an exceptional story!
    May God Bless your journey!


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