Date Night: Craig & Charlotte Benson

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

The Battle Against Batten Disease

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

Country singer joins Austin dad’s effort in finding cure for disease

By KVUE staff on KVUE.com

published January 13, 2012

An Austin father is on a desperate search to find a cure for a disease most people know very little about.

It’s called Batten Disease. It begins in childhood and is often fatal. Now his efforts have gotten the attention of country music superstar Keith Urban.

Co-founder of the Beyond Batten Disease Foundation Craig Benson spoke to KVUE about his daughter, who suffers from the disease.

To help out, you can attend a special event at the Austin City Limits Moody Theater. It’s called Date Night with Keith Urban. It’s taking place on Friday,Feb. 10 at 9 p.m.

http://www.kvue.com/story/entertainment/2014/05/20/2296918/

Country Music Superstar Keith Urban Comes to Austin for Feb. 10 Gala Supporting Beyond Batten Disease Foundation

Austin, TX (PRWEB) November 02, 2011

Keith Urban – among country music’s biggest stars and a nominee for CMA’s 2011 Entertainer of the Year and Male Vocalist of the Year awards – will return to Austin for the first time in many years to perform at a Feb. 10 gala benefiting Beyond Batten Disease Foundation. The foundation fights Batten disease and also is working to eradicate hundreds of additional, serious and often fatal, inherited, childhood illnesses.

“Date Night with Keith Urban,” at ACL Live at The Moody Theater, will include a full concert performance by Urban, renowned for blockbuster shows, in Austin’s newest and arguably most spectacular music venue. The evening will begin with a “can’t miss” VIP pre-party attended by a who’s who list of guests from Austin, Dallas and Houston and an interactive auction featuring unique items and experiences.

The foundation is offering a variety of event sponsorship packages including some that provide a meet-and-photo opportunity with the superstar and accommodations at the hip W Hotel next to The Moody Theater (ideal for a memorable Valentine’s Day weekend getaway). Individual tickets, available exclusively through the Beyond Batten Disease Foundation website, go on sale to the public November 21.

Craig and Charlotte Benson of Austin started the foundation in 2008 after their then five-year-old daughter, Christiane, was diagnosed with Batten disease, a rare and fatal neurodegenerative disorder. Children born to parents who unknowingly each carry a gene mutation for Batten disease are at risk to inherit the condition which initially causes vision loss and seizures, then progressively impairs cognitive and motor capacities, and ultimately results in death during the late teen years or early 20s. 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.

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.

Funds generated by “Date Night” will help the foundation to complete work to bring the test to market in 2012. The foundation plans to use proceeds from sales of the test to become self-sustaining 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 Shannon Janek, Event Co-Chair. “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.”

According to foundation-funded research, on average, each person carries three genetic mutations that can cause a severe childhood disease or disorder. Carrier parents can even pass these mutations onto children who do not develop a condition. When these children mature and have kids, their children also are at risk of suffering from one of these conditions. Better-known examples of serious, inherited childhood diseases include Tay-Sachs disease, Cystic Fibrosis and Spinal Muscular Atrophy, or SMA. (One in 40 people are carriers for SMA.) A carrier screening strategy similar to the one that the foundation is developing has been used for Tay-Sachs disease and achieved an impressive 90 percent reduction in the incidence among at-risk populations.

About Keith Urban

Among today’s most celebrated country music artists, Keith Urban has been honored with Grammies and Australia’s coveted Aria Award as well as awards from the Country Music Association and the Academy of Country Music. New Zealand-born and Australia-raised, Urban moved to Nashville in 1992. His first American album came as a member of The Ranch (1997), followed by an increasingly accomplished series of multi Platinum-selling solo albums: Keith Urban (1999), Golden Road (2002), Be Here (2004), and Love, Pain & The Whole Crazy Thing (2006). The compilation Greatest Hits: 19 Kids (2008) included such No. One hits as “But For The Grace Of God,” “Somebody Like You” (named the top country song of the decade), “Who Wouldn’t Wanna Be Me,” “You’ll Think Of Me,” “Days Go By,” “Making Memories Of Us,” “Better Life,” and “You Look Good In My Shirt.” In his sixth and most recent album, Get Closer, Urban dives deeply into the exploration of love and relationships. For more information, please visit http://www.keithurban.net.

About Beyond Batten Disease Foundation

Beyond Batten Disease Foundation works to cure and prevent Batten disease, a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures, then cognitive and motor impairment, and ultimately death during the late teen years or early 20s. The foundation raises funds for research and is leading development of an easy and inexpensive, groundbreaking blood test to detect the gene mutations that cause Batten disease as well as 600-plus other rare but serious and often fatal childhood ailments. For more information, visit https://beyondbatten.org.

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Designing a Plan for Drug Discovery in Rare Pediatric Neurodegnerative Disease

by Danielle Kerkovich, Ph.D. and Amy Drew

published July 21, 2011

Editor’s Note: There are currently no cures for neurodegenerative diseases, including Batten disease, a rare and fatal disorder affecting young children. While researchers have made headway in preventing genetic disorders through preconception carrier screenings and have found potential drug targets, the gap between basic research and clinical treatment development remains. To overcome this gap, write authors Dr. Danielle Kerkovich and Amy Drew, researchers in academia and the pharmaceutical industry, supported by government agencies and nonprofit institutions, must come together to share expertise and promote translational research.

To read the full article, click here.

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