by Amanda Ivarra on Ask Miss A, Charity Meets Style
published February 20, 2012
Like most people, I had never heard of Batten Disease or the Beyond Batten Disease Foundation until I heard that Keith Urban was coming to Austin. For me, I heard the words in this order: “Keith Urban” first, “Beyond Batten Disease Foundation” second and then “Batten disease.” Naïve about the whole thing but attracted to it, I was interested in covering the event for Miss ATM.
There was one question that I wanted answered, “How does an organization that most people have never heard of bring in a big name like Keith Urban to do a benefit concert?” First, I read the press release and then every webpage on the organization’s website. I was amazed at the information I came across: the guest list including some of Texas’ elite, the sponsorship levels, the number of sponsors and the accomplishments of this organization in just three short years. I felt like I had found the answer to my first question, but now I had another question, “How have they done all of this in just three short years?”
Prior to the event, I spoke to one of the event co-chairs, Sabrina Brown. I never asked Brown the question that was weighing heavily on my mind for fear of being too direct. Instead, I asked general questions about the event, the foundation and her involvement. During our conversation, I took note of a few things: her connection to the founders, Charlotte and Craig Benson, the overwhelming support from family, friends and the community and the role that Benson’s career played in this situation. Through our little chat, I found the answer to my second question.
Keith Urban (Photo Credit: Amanda Ivarra)
I was anxious to include this information in the pre-event article, but I held back. I chose to save it for the post-event article because, well, it just wasn’t the right time. Perhaps, I needed a little more time to reflect on this story so that I could communicate the significance of it best.
The story of the Beyond Batten Disease Foundation goes beyond Batten disease and making a difference. It’s a story of acceptance, understanding and love.
Accepting the difficult situations in life…
Perhaps, you’ve heard the adage, “turn your pain into purpose.” Well, imagine the pain and devastation endured by the Bensons when they learned that their then 5-year-old daughter, Christiane, had Batten disease, a rare neurodegenerative disorder that is often fatal by the late teens or early twenties. Suddenly, the future they had dreamed for their child was gone.
Understanding what is willed to us…
As parents they had the urge to want to do something for their child, but what set them in motion was the overwhelming love and support of the community. They founded the Beyond Batten Disease Foundation in August 2008 with two goals in mind (1.) to fund research for the treatment of Batten disease and to ultimately find a cure and (2.) to eradicate hundreds of other rare and fatal diseases like it.
Diane Humphreys, Lanc Thompson and Dawn Thompson (Photo Credit: Amanda Ivarra)
At the time, plans for conducting research to eradicate diseases like Batten disease were taking place a few offices down from Craig’s. Furthermore, those spearheading the research were colleagues and friends of Mr. Benson’s. While the scientists conducted the research, friends of Charlotte’s gathered to raise money for the organization’s mission. In three years, the foundation developed the most comprehensive carrier screening test panel for detecting genetic mutations that cause Batten disease and more than 600 other devastating and rare conditions.
It’s a huge achievement and milestone for the foundation and the medical community, but this is only the beginning. Ongoing research is being conducted at several children’s hospitals across the country, and there’s hope that these scientists will be able to find a cure for Batten disease within the next few years.
While the Bensons feel as though they are rushing against the clock to save their daughter’s life, they know the future is uncertain for her. While it pains them to see their child suffer from this disease, they also see how this experience has brought a community together to make a difference in this world. Every day, they are inspired and motivated by the outpouring love and support they receive from their community—a community that is filled with people who are passionate and determined to find a cure for this disease.
Love is about the things we do…
Allison and David Phillips (Photo Credit: Amanda Ivarra)
In my conversation with Brown, I asked what she loved most about being a part of the Beyond Batten Disease Foundation, and she said it was the community. The committee she worked with to organize “Date Night with Keith Urban” was so dedicated to the goals, the mission, the family and to helping, not only Christiane and the Bensons, but other children and their families as well.
On Friday, February 10th, the community came together for the foundation’s annual gala. This community is made up of thousands of people from all different backgrounds–friends and colleagues of the family, healthcare professionals, politicians, celebrities, musicians and music lovers. These “everyday people” came from across the state, the country and the world to show their support for this global cause.
The event was held at ACL Live at the Moody Theater, an intimate venue appropriate for this occasion. Prior to the concert, the foundation hosted a VIP party and live auction. The live auction alone raised over $500,000, but the kindness of the community and their willingness to work in support of the foundation’s mission goes beyond that. It’s priceless.
http://askmissa.com/2012/02/20/recap-beyond-batten-disease-foundations-date-night-with-keith-urban/