BBDF Blog

by Pamela LeBlanc on austin360.com

published March 16, 2012

Imagine running under a full moon, through the Texas Hill Country, past mooing cows and howling coyotes you can’t even see.

After 5 or 6 miles, a glowing light appears in the distance. As you get closer, you see a cluster of vans pulled off the road. Your friends are there, sipping coffee and urging you on. When you finally reach them, you tag one of your teammates, who starts running through the night.

On April 28 and 29, several hundred athletes will run 90 miles from Enchanted Rock State Natural Area to Austin during the Run to the Sun.

The event raises funds for Beyond Batten Disease Foundation, a non-profit, Austin-based organization that raises money to fight Batten disease, a rare and fatal neurodegenerative disorder.

During the first-ever Run to the Sun last year, runners sped from Mount Bonnell in Austin to Enchanted Rock near Fredericksburg, where they finished just as the sun rose over the huge granite dome. This year, they’re reversing course, starting in the country and finishing in the city.

Lance Thompson started the race to draw attention to the disease that affected Christiane Benson, the daughter of Austin couple Craig and Charlotte Benson. The disease, which affects children born to parents who unknowingly carry a gene mutation, starts with vision loss and seizures, but eventually causes mental and physical disabilities. Victims die by the time they reach their late teens or early 20s.

Running through the night symbolizes what Christiane and others who have the disease go through as they lose their sight.

“It’s supposed to be hard. That’s what she’s going through,” says Paige Alam, who ran the relay last year and plans to run again this year.

Teams of eight, each with two accompanying support vehicles, run a total of 16 legs. Runners wear reflective vests and blinking lights, and signs warn motorists that they are on the road. Starts are staggered, based on seed times. Last year’s winners held a 7-minute per mile pace. Last year’s event drew 25 teams; more are expected in 2012.

“It’s like a traveling circus,” Thompson says.

The race will end with a pancake-fueled, music-infused celebration at Laguna Gloria. The Bensons will speak about their daughter and the foundation.

The event offers a closer-to-home option than other overnight relays, such as the popular Hood to Coast Relay in Oregon. “This is like running a mini version of it, it’s here and it’s raising money for people here,” Alam says.

Run to the Sun raised about $240,000 last year. Entry fee is $85 per person this year, and each team pledges to raise $5,000 for Beyond Batten. To register or for more information go here.

“You’re competing with people and running with a team, but you’re all supporting the same cause,” says safety coordinator Jay Hillscher.

The Bensons established Beyond Batten Disease Foundation in August 2008 after Christiane was diagnosed with Batten disease. Since then, the foundation has developed a comprehensive carrier screening test to detect genetic mutations that cause Batten disease and more than 600 other rare conditions.

Christianne is now a 9-year-old third-grader at Casis Elementary. Two teams of teachers plan to run in her honor.

http://www.austin360.com/blogs/content/shared-gen/blogs/austin/fitcity/entries/2012/03/16/run_to_the_sun_overnight_relay.html

CLICK HERE

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 A^TM.

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 10^th, 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/

published February 12, 2012

This past Friday, Austin-based Beyond Batten Disease Foundation hosted a benefit concert featuring country star, Keith Urban. The final item up for bid created the biggest buzz of the night, a package that included two VIP tickets to Austin’s inaugural Formula One race in November and the chance to do three laps on the Circuit of the Americas in a race car. The winning bid went for $60,000- twice- raising a total of approximately $120,000 for The Batten Foundation.

“It was pretty amazing. It was a big night, but Formula One was clearly the top performer of our auction,” said Shannon Janek, co-chairwoman of the event. Janek said one of the winners was Austin businessman/philanthropist and car collector, Milton Verrett .

Batten disease is named after the British pediatrician who first described it in 1903. It’s a rare disorder of the nervous system that initially causes loss of vision and seizures in children and typically results in their deaths in the late teens or early 20s. Beyond Batten Disease Foundation seeks to eradicate Batten disease and prevent other serious and frequently fatal genetic childhood diseases.

Austinites Craig and Charlotte Benson started the foundation in 2008 after their then 5-year-old daughter, Christiane, was diagnosed with the disease.

Circuit of The Americas is proud to have been a part of this event which raised more than $500,000 through the live auction. The money will be used to publicly launch a genetic screening test for Batten and 600 other diseases. More can be found about the organization at www.beyondbatten.org.

http://circuitoftheamericas.com/articles/circuit-of-the-americas-brings-in-60000-for-local-charity

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 10^th 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.

http://askmissa.com/2012/02/08/date-night-with-keith-urban-benefits-beyond-batten-disease-foundation/

by Meredith Rainey in CultureMap Austin

published February 6, 2012

Our job as parents is to protect our children. So what do you do when you find out you unknowingly passed a rare and incurable genetic disease on to your only daughter? If you are Charlotte and Craig Benson, you catch your breath, lean on your faith and after the initial shock fades some, you choose to tackle the greatest challenge of your lives head on — you form a foundation to find a cure to try to save your daughter’s life, and the lives of hundreds of other children confronting a fate no child should ever have to face.

The Bensons, who founded the Beyond Batten Disease Foundation in 2008 after their then 5-year-old daughter Christiane’s Batten Disease diagnosis, have a lot they’d like to accomplish this year, including launching a screening test for Batten Disease and hundreds of other rare genetic diseases with devastating effects.

Their foundation has enlisted the talents of country music superstar Keith Urban to help raise money for and awareness of the cause they hold so dear to their hearts. Just in time for Valentine’s Day, Urban is headlining the organization’s annual fundraiser on Feb. 10 at ACL Live at The Moody Theater.

“Date Night with Keith Urban” features a VIP party, a live auction and of course a stellar concert crafted by an artist whose long list of awards includes being named CMA Entertainer of the Year.

The money raised from the event will help launch the genetic screening test the foundation helped pioneer. It will also go towards the Benson’s ultimate goal of finding a cure for the fatal neurodegenerative disease that’s taking their daughter’s sight and currently has no known treatment.

“Hopefully over the next generation we’ll see a reduction in incidence of all of these [diseases] and I think that would be a great legacy for us and for Christiane,” Craig Benson says.

Charlotte Benson says Christiane was a beautiful baby, complete with ten fingers and ten toes. The proud parents describe the day she was born as the happiest day of their lives. They never would have imagined this perfect little girl may not live to graduate high school or have a family of her own.

“She had a perfectly normal birth and we had every reason to believe that she would be a perfectly normal child. And then, when she got into kindergarten, when she started to read, she put books really close to her face and so we thought she just needed some glasses. So we took her to the eye doctor, and then one appointment led to another and we ended up in the neurologist’s office. Six weeks later, we had a diagnosis of Batten Disease,” explains Charlotte.

Batten disease is an inherited disorder of the nervous system that is fatal. Early symptoms can appear between age 5 and 10 and may start with vision problems and seizures. Children with Batten Disease eventually go blind and become physically and mentally incapacitated; they don’t live past their teens or early 20s.

That kind of news would make many parents want to crawl into bed and stay there. A few months after the devastating news, the Bensons made a decision: they weren’t going to let this disease define them — they were going to try to define it.

“There were a couple of evolutions of this. Obviously at first, we didn’t want to do anything. You know, the news kind of knocks you down for a bit. I think as we started sharing our story with close friends and family, I think that’s where we got some of the support and strength that we got initially from our faith… we started getting the grasp that there was maybe something we could do to help this,” Craig says.

Charlotte adds, “When we first started the foundation, it’s the absolute horror of a doctor telling you to go home and there’s nothing you can do about it except make your child comfortable and watch the story unfold. And so, as a parent, your instinct is to do something to try to change this and to make a difference not only for her but for so many other kids who are stricken with the same disease.”

The Benson’s say they soon realized they wouldn’t be alone in their mission.

“We found ourselves surrounded with an incredibly golden circle of friends with enormous talent, intelligence, resources and contacts. We’re in a really unique position not only with the friends and community surrounding us. That coupled with Craig’s position as CEO of Rules Based Medicine and all of his contacts to every brilliant medical doctor and scientist, those two things combined made it a natural fit to try to go forward and do something to make a difference,” Charlotte says.

With the support of their family, friends and neighbors and Craig’s connections in the biomedical industry, the Bensons had what they needed to start their mission to find a cure for their Christiane.

They named their foundation the Beyond Batten Disease Foundation, not knowing at the time how appropriate that title would be. Work funded by the foundation has resulted in the creation of a test to screen for not only Batten Disease, but also for approximately 600 other rare genetic diseases. Though the diseases may be rare themselves, collectively they affect thousands of children.

With a simple cheek swab, couples can be screened to find out if they are both carriers for a long list of genetic diseases they may pass on if they have children.

“Part of our mission has certainly resonated with everyone because it does affect everybody,” Craig says. “These rare genetic mutations that obviously affect us — everyone has some. We knew it was very critical early on for us to reach an audience outside of this small group of  500 families in the US that are directly affected [by Batten Disease].”

He says an added benefit is that royalties from the screening test will provide a revenue stream to fund the foundation’s other projects. The Benson’s say while the screening test, which is currently undergoing beta testing before being launched nationally, is a great start, their ultimate goal is to help eradicate Batten Disease — to find a cure for their little girl.

Christiane is now nine years old and in the third grade. Her parents are trying to keep life for her and her younger brother Garland as normal as possible, while managing her symptoms and taking things the only way they can —  as they come.

“[Christiane] knows she has Batten disease. She knows that she’s going to be blind and we told her that that there are some other things that come with it, but we’re sort of crossing that bridge as her symptoms reveal themselves,” Charlotte says.

The Bensons cherish every day and every moment they have with Christiane, while trying to stay hopeful. Charlotte says the horrible diagnosis they got four years ago changed their perspective and their paths forever.

“It’s strengthened our faith. We’ve seen the goodness in people that we’ve never known before, and seen a community of people surround us and empower us on our mission. You never take a single moment for granted with your children – you live for today.”

If you’d like to be part of the biggest fundraiser of the year for the Beyond Batten Disease Foundation and want to see what makes Keith Urban such a sought after entertainer, you’ve got your chance on Feb. 10 at The Moody Theater.

http://austin.culturemap.com/newsdetail/02-06-12-21-38-keith-urban-lends-talents-to-raise-money-for-austin-based-foundation-aimed-at-curing-rare-genetic-disease-affecti/

LIVE AUCTION PREVIEW

Formula 1 Package

• 2 premium reserved seats for all three days of the Formula 1 United States Grand Prix™ with on-site parking pass
• 2 VIP reserved tickets to a concert of choice in the Grand Plaza Amphitheater
• A “Hot Lap Lesson”: 3 laps on the full Circuit of The Americas Grand Prix course with a professional driving instructor.Instructor will provide driving tips between laps in an effort to improve your performance.Lap times will be recorded so you can compare your times to those of Formula 1 drivers. Includes photo at finish line

Girls’ Dream Package

• 4 Lake Austin Spa Resort’s “Full Day Away” Spa Packages. East guest may choose from 2 rejuvenating 50-minute package spa treatments and one indulgent 80-minute package spa treatment. Package includes spa lunch, spa gift and gratuities
• One Chanel Mademoiselle bag
• Full makeovers for 4 at Ron King Salon. Package includes cut, color, makeup, and shellac manicure for 4 guests
• A $2,500 gift certificate to The Menagerie, Austin’s premier fine jewelry, gift, and tabletop salon
• Private Luncheon for 4 with a Fashion Presentation at Neiman Marcus Austin and 4 $250 gift certificates

Cabo Luxury Home

• 6 day and 5 night stay at Casa Malibu in Pedregal, Cabo San Lucas, Mexico. Click HERE for more details on the luxury home
• Gated, guarded community
• 5 bedroom, 5 bathrooms plus 2 half baths
• Sleeps 12-14 and perfect for 2 families or 5 couples
• Flat Screen TVs, Satellite TV, Wireless Internet
• Pool, Jacuzzi, Outdoor Bar
• Dates of stay will be arranged through the property owner. The package excludes Easter (April 2-9, 2012) and Thanksgiving (November 19-26, 2012) dates

Louisiana Alligator Hunt

• A thrilling alligator hunt and saltwater fishing adventure in the Louisiana bayou for up to 8 people
• Package includes a 4 day and 3 night excursion, accommodations, some meals, guide service and alligator hunting tags
• Great for a weekend with friends or a father and son adventure!
• Dates of the package must fall within Louisiana’s alligator hunting season and are to be arranged through Beyond Batten Disease Foundation

Jack Ingram Private Concert and Dinner in Austin

• Country music star Jack Ingram will perform a private, intimate concert for you and your friends in your Austin area home
• The package includes a catered gourmet dinner from 34th Street Cafe and flower arrangements from David Kurio Designs

Meet Keith Urban

• A once-in-a-lifetime opportunity for you and a friend to go behind the stage, meet, and have your picture taken with Keith before the concert on February 10, 2012
• What could make this package even better? One autographed guitar with a personal message from Keith!
• Note: Must be present at the event to participate

Aspen Mountain Paradise

• 7 day and 6 night stay at a new, gorgeous home located in Snowmass Village. Click HERE for more details on the home
• Ski access via a trail out and down the street in (limited to ability)
• 4 bedrooms and 4 private baths comfortably sleeps up to 10 people
• Fireplace, hot tub, Jacuzzi and steam showers
• Large outdoor deck areas for entertaining and enjoying the spectacular views
• Large flat screen TVs and wireless internet connection
• Dates of stay to be arranged with the property owner. The package excludes Christmas, Thanksgiving, Spring Break, and Fourth of July dates

UT Austin President’s Package

• 2 VIP tickets to the President’s Suite for any home game of your choice! A Longhorn football games is the hottest ticket in town, and the President’s Suite is the best seat in the house. President Bill Powers invites the high bidder and their guest to a Longhorn home football game in the 2012 season
• Reserved VIP parking
• The package also includes 2 Southwest Airlines round-trip airfare tickets!

Texas A&M Chancellor’s Package

• Be the Chancellor’s guest at the Texas A&M vs. LSU game on October 20, 2012 and receive 2 VIP tickets to sit in the Chancellor’s Box, 10^th Floor, Kyle Field
• Package includes the Presidential Pre-game Buffet and one parking pass
• Tickets and parking pass will be mailed to recipient after September 1, 2012

Snowmass Village Getaway

• 7 day and 6 night stay in a lavish, 6-bedroom mountain home near Aspen
• Spacious home accommodates up to 10 people
• 2 cars are available during your stay and shuttle transportation to and from the airport will be provided
• Gourmet kitchen, a fitness room and a full game room with a bar
• Natural landscaping with wildflowers and a snowmelt driveway
• Dates of stay to be arranged with the property owner. The package excludes Christmas, Thanksgiving, Spring Break, and Fourth of July dates

Duck Hunting Package

• 4 day and 3 night stay at Wild Wings, a private hunting lodge in Stuttgart, Arkansas, the undisputed Duck Hunting Capital of the World
• Package includes all hunting arrangements for 4 hunters and accommodations for up to 4 additional family members
• Lodge accommodations and some meals included
• Dates to be coordinated with lodge owner and must fall within duck hunting season

French Chateau Escape

• A unique opportunity to spend five days/nights in a stunning Gustavian cottage on the property of a fabulous privately owned French chateau located in the spectacular Loire Valley, 2 hours southwest of Paris
  
• The cottage has 4 bedrooms and 4 bathrooms and sleeps 8 people
  
• Enjoy visiting the other chateaux in this famous wine region, such as Chambord and Cheverny, bike riding, and, of course, the food and wine
  
• The package includes weekend dinners with the owners in their exquisite chateau
  
• Available between the months of May & July
  

Diamond Package

• 18K White Gold Diamond Loop Earrings, 5.06 Total Diamond Weight (TDW), Round Brilliant Cut (RBC)
  
• 14K White Gold Diamond Necklace, 13.72 Total Diamond Weight (TDW), Round Brilliant Cut (RBC)

Cowboys Luxury Suite

• Watch the Cowboys play against the Cleveland Browns from the comfort of a luxury “Ring of Honor” suite
• The suite package includes tickets and parking for 18 people
• This game will feature Colt McCoy’s return to Texas
• The auction winner will receive an official certificate to redeem, along with complete instructions and contact info
• Date of game TBA

by Lauren Smith Ford in Tribeza

published January 25, 2012

By Day: Founders of the Beyond Batten Disease Foundation

How They Met 
Charlotte says: We met while we were living in Paris. Craig was working for a company based out of Houston, and I had started a business exporting antiques back to the States. We met among a group of friends. Americans have a way of finding each other when they live abroad, and particularly since we are both from the South. Craig likes to say that I was the only other one who understood his French!

Their Perfect Date 
Charlotte says: Craig and I have a standing babysitter every Thursday night. Because of our busy schedules, finding a way to relax and reconnect is our top priority. As a result, our favorite date is often very casual. We love to take a walk around Lady Bird Lake, which gives us a chance to enjoy being outdoors while catching up with each other. Then, Mecca Gym and Spa is our favorite spot for the occasional massage. Afterward, we’ll walk across the street to Whole Foods and pull up a chair at the fish bar.

Off the Clock 
Charlotte says: Our usual standbys are Perla’s, Uchiko and 34 Street Cafe.

Why It Works 
Charlotte says: We have a shared faith, we have a shared life purpose (with our work at Beyond Batten Disease Foundation), we respect each other and we forgive each other.

Keeping Love Alive 
Charlotte says: We spend regular time together — alone. We have a date night every week and take quarterly weekends away.

Beyond Batten Disease Foundation 
Craig and Charlotte Benson started the foundation a few months after receiving the news of their daughter’s diagnosis of Batten disease. They had never heard of the disease before, but they quickly learned that it causes blindness, seizures, mental and physical incapacity and is fatal by late teens or early 20’s. There is no treatment. There is no cure. “Our daughter, Christiane (age nine), is the inspiration for the foundation, and our community has surrounded and supported us with incredible talent and resources,” Charlotte says. “The overwhelming participation from our community has enabled us to make tremendous progress. Austin can definitely take co-ownership in all that’s been accomplished!” Through the Bensons’ goal of eradicating the disease (and hundreds of other rare genetic diseases) with a screening test the foundation has developed, Charlotte says they have “found our life’s purpose.” Beyond Batten’s next fundraising event will be held on February 10 at ACL Live, featuring a performance by country star Keith Urban. For more information and tickets, visit beyondbatten.org/date-night.html.

http://www.tribeza.com/magazine_content/date-night-craig-charlotte-benson

On KTBC Fox 7

Published February 1, 2012

Country Singer Keith Urban will be in Austin on February 10 to raise moneyand awareness about Batten Disease, a fatal disorder of the nervous system that affects children.

Craig Benson sat down with us on Good Day this morning to talk about the work of the Beyond Batten Disease Foundation, and how it has helped his daughter.

http://www.myfoxaustin.com/clip/7209750/The%20Battle%20Against%20Batten%20Disease