by Amanda Ivarra on Ask Miss A, Charity Meets Style
published February 8, 2012
It is a rare and fatal neurodegenerative disorder that most people don’t know about, and it’s called Batten Disease. Children born to parents who unknowingly each carry a gene mutation for this disease are at risk to inherit the condition. Early symptoms of this disorder usually appear between the ages of 5 and 10. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. There is no treatment or cure for this disease, and eventually those affected will die in their late teens or early twenties.
Photo Credit: Beyond Batten Disease Foundation
It’s a lesser known medical disorder, but it has caught the attention of a well known country superstar and many of Texas’ elite. Keith Urban will perform on Friday, February 10th at a gala benefiting the Beyond Batten Disease Foundation, and many of the state’s who’s who will be in attendance to support this cause. The foundation hopes to raise $1 million to help further its mission in eradicating Batten disease and other inherited, fatal childhood diseases.
“Date Night with Keith Urban” will be held at ACL Live at The Moody Theater and will include a full concert performance by the country vocalist. Balcony seats are available for those wishing to attend the concert only, but you can enhance this experience by purchasing a floor ticket or a VIP Package.
Keith Urban (Photo Credit: countrymusicfever.com)
As part of the VIP Package, you’ll have the opportunity to attend a VIP party prior to the concert, enjoy dinner and drinks and the chance to take part in the live auction. The gala committee, led by Event Co-Chairs Sabrina Brown and Shannon Janek, has put together some outstanding and luxurious live auction packages.
- Exclusive Formula 1 Package– Two premium reserved seats for all three days of the Formula One United States Grand Prix™. Two VIP Reserved tickets to a concert of choice in the Grand Plaza Amphitheater. Hot Lap Lesson: three laps on the full Circuit of the Americas Grand Prix Course with driving tips provided by a professional driving instructor.
- Girls’ Dream Package – Lake Austin Spa Resort’s Lake House Full Day Away for four. One Chanel Mademoiselle bag. Full makeovers for four at Ron King Salon. $2,500 gift certificate to The Menagerie. Private Luncheon for four with a Fashion Presentation at Neiman Marcus Austin with four $250 gift certificates.
- Cabo Luxury Home – 6 day/5 night stay at Casa Malibu in Pedregal, Cabo San Lucas, Mexico, where you can enjoy the panoramic views of the Sea of Cortes and the Pacific with beautiful sunrises and sunsets. This stunning Mexico City-style modern home is in a gated community, has five bedrooms and sleeps 12-14 guests.
- Meet Keith Urban – You and a friend will have the once-in-a-lifetime opportunity to go behind stage to meet Keith prior to his performance on Feb. 10 and have your picture taken with him. Package includes an autographed guitar with a personal message from Keith.
- Snowmass Village Getaway – 7 day/6 night stay at this six bedroom oasis in the mountains located near Aspen. Accommodates up to 10 people. Includes use of two cars.
Because Batten disease and so many other similar inherited childhood diseases are uncommon, there is not much federal funding for research aimed at treatment and prevention. Founders Craig and Charlotte Benson of Austin felt compelled to change that. After their then five-year-old daughter, Christiane, was diagnosed with Batten disease, they organized the Beyond Batten Disease Foundation.
The Benson Family (Photo Credit: Tracy Trahar)
Today, their organization leads the way in medical research regarding Batten disease. In its three short years, the foundation has developed the most comprehensive carrier screening test panel for detecting genetic mutations that cause Batten disease and more than 600 other devastating, rare conditions that strike and kill thousands of kids each year. In addition to being so comprehensive, the test will be easy to administer and more economically priced than the cost of an individual test for any one of the diseases on the panel. The scientific and medical communities have heralded the test as a major breakthrough and it has received extensive media and professional journal coverage around the world.
Proceeds from this gala will help bring this comprehensive, blood test to market. Once the test is brought to market, the foundation hopes to use the funds generated from the sales of the test to become a self-sustaining organization for continuing Batten disease research.
“Keith Urban is one of the greatest entertainers of our day so we are ecstatic to have him join us at this exciting event,” said Janek. “We expect his participation to boost awareness of Batten disease and the hundreds of other serious, inherited childhood diseases. He will be a huge draw, generating important financial support for the foundation and spotlighting its work, which is relevant for everyone planning to have children.”
WHEN: Friday, February 10, 2012 at 9 p.m.
WHERE: ACL Live at The Moody Theater
310 W. Willie Nelson Blvd.
Austin, TX 78701
TICKETS: $149 Balcony Seating. $298 Floor Ticket. $10,000 Galaxy Sponsor. Purchase tickets online. Purchase Balcony Tickets by Phone: 1-877-435-9849.
For a special discount, visit Plum District here and get a Balcony ticket for $99.
SCHEDULE OF EVENTS: 6 p.m. – Floor Ticket and VIP Check-In. 6:30 p.m. – VIP Party. 7:30 p.m. – Live Auction. 8:15 p.m. – Balcony Ticket Check-In. 9 p.m. – Keith Urban Performs.