Beyond Batten Disease Foundation today announced expansion of its “Run to the Sun” overnight relay due to popularity of the oversold 2011 inaugural event and strong registration so far for this year’s April 28-29 run. Event organizers are planning for up to 35 teams with as many as 350 runners in 2012 compared with last year’s total of 25 teams and 250 runners.
Also this year, the foundation is reversing the 95-mile course through the beautiful Texas Hill Country. Last year, the relay started atop Austin’s scenic Mount Bonnell and finished at Enchanted Rock State Natural Area near Fredericksburg. This year, runners will begin at Enchanted Rock on the afternoon of Saturday, April 28, and finish on Sunday, April 29 at the Austin Museum of Art’s Laguna Gloria, with a 6:00-9:00 a.m. breakfast celebration featuring live music by The Gospel Stars.
Based in Austin, Beyond Batten Disease Foundation is developing a treatment and cure for Batten disease as well as a test to screen for the condition along with hundreds of other serious, genetic, childhood illnesses. Batten disease is a rare and fatal inherited, neurodegenerative disorder that strikes young children. The condition 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. The relay run will help raise awareness of Batten disease and funding for the organization’s lifesaving work.
“Run to the Sun is a spectacular event in its own right, sure to be a highlight of the year for participating runners, but it’s also a way to help change the world – by raising funds for research to eradicate Batten disease and hundreds of other devastating disorders that seriously impair and even kill children,” said Lance Thompson, Run to the Sun’s creator and co-chair. “We encourage everyone to get involved – even if you’re not a runner, you can volunteer to help provide support to runners along the route, and we always welcome sponsors.”
A growing number of corporate teams have signed up for the run, including groups from Bulldog Solutions, Motorola, and Rules-Based Medicine.
Run to the Sun’s website has information on how to:
Join or start a team
Sponsor a runner
Volunteer to help at the start or finish or along the route
Beyond Batten Disease Foundation was started in 2008 by Craig and Charlotte Benson after their then five-year-old daughter, Christiane, was diagnosed with Batten disease. Children born to parents who unknowingly each carry a gene mutation for Batten disease are at risk to inherit the condition but 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 years, the foundation has developed the most comprehensive rare disease genetic 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.
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, 10th 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
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 http://www.beyondbatten.org.
