I came home from the Beyond Batten Disease Foundation benefit Friday night with a strong desire to hug my son tight, to turn the radio up loud and to thank God there are people in this world that give a damn enough to try to make a difference.
I had the pleasure of meeting Charlotte and Craig Benson two weeks ago when they welcomed me into their Austin home to talk about their foundation’s biggest fundraiser of the year, "Date Night With Keith Urban." They struck me as two very together people, especially given the cards they’ve been dealt. From what I’ve witnessed, they are optimistic, loving and determined in their quest to find a cure for a deadly disease that will otherwise rob them of their beautiful daughter, Christiane, far too soon.
The incredible pre-Valentine's Day show that Mr. Keith Urban put on was part of a magical evening designed to raise a million dollars for a husband and wife with a love for their daughter and each other so strong it brought many in the crowd to tears.
Friday night, they were front and center as a great entertainer brought even the people in the balcony at ACL Live at The Moody Theater out of their seats, dancing along with his every word. The incredible pre-Valentine's Day show that Mr. Keith Urban put on was part of a magical evening designed to raise a million dollars for the Austin based non-profit, started by a husband and wife with a love for their daughter and each other so strong it brought many in the crowd to tears.
When you speak with Craig and Charlotte Benson, it quickly becomes clear that they do not want others to feel sorry for them. They want others to answer their call to action to make a difference in the lives of children with deadly genetic diseases, including their nine-year-old daughter, Christiane. Four years ago, she was diagnosed with a rare neurodegenerative disease called Batten Disease. Without a cure, she will continue to lose her sight and won’t live long enough to graduate college.
Despite the challenging path the Bensons are navigating, they are able to look to their faith and find joy in their many blessings, while doing an incredible job of inspiring the giving spirit of others. Friday night was not just about a great concert at a great venue, it was about showing a community that one person, or in this case two, can make a dramatic impact on the world in which we live.
The evening started with a VIP reception with Governor Rick Perry and his wife Anita on the guest list, along with Attorney General Greg Abbott and Lt. Governor David Dewhurst. Before the live auction began, Craig and Charlotte Benson thanked the crowd and organizers for their continued support. A video played on a giant screen, chronicling the Benson’s journey and the leaps and bounds their foundation has helped make in screening for rare genetic diseases and in finding a cure for Batten Disease.
A lively auction followed, with proceeds going to the foundation. Jack Ingram, who sang at the first foundation fundraiser several years ago, donated an auction item that includes a private dinner and concert. He stood anxiously on stage as the bids rolled in. The item went for $35,000 and, later in the evening, it was announced Ingram had sold a second concert package for $30,000. A Formula 1 package that includes premium seats, concert tickets and a ‘hot lap’ driving lesson went for $60,000 — twice!
After the auction, country music superstar Keith Urban took the stage, ready to rock Austin! He seemed truly excited to be in the Live Music Capitol of the World and to be part of such an impactful event. Before performing, he met backstage with the Bensons and learned about their efforts to eradicate Batten Disease.
Urban's high-energy show had the crowd singing along and wondering just where the energetic Aussie might pop up next. He left the stage on more than one occasion, once ending up on a small platform in the middle of the crowd to sing “I’m In,” one of his recent hits co-written by Texas’ own Radney Foster.
Later in the concert, he walked through the crowd, up the stairs and across the mezzanine where a microphone stand was waiting for him. He finished “You Look Good in My Shirt” from there and when the song was over, he signed his electric guitar and handed it to a female fan standing next to him, to keep as a souvenir from an unforgettable evening.
One of the other highlights was when Urban invited Jack Ingram back to the stage to perform an acoustic version of the George Strait hit “You Look So Good in Love.” Towards the end of Urban’s nearly two-hour performance, he found Craig and Charlotte Benson in the crowd in front of the stage and thanked them for including him in the benefit.
Throughout the evening, a quote from Helen Keller kept popping up on the big screen behind the stage that read, “Alone we can do so little. Together we can do so much.”
Friday night, Austin proved that, by raising about a million dollars to fund the launch of a genetic screening test for approximately 600 rare genetic diseases, including Batten Disease, and to help find a cure for Batten Disease.
I sincerely hope the Bensons find what they are looking for in time to save their precious daughter. I only met Christiane for a brief moment, but the effect she has had on me will last a lifetime.