Father Fighting to End Batten Disease – FOX 7 News Edge at 9
by Loriana Hernandez on FOX 7 News Edge at 9
Craig Benson is fighting to end Batten disease. Click here to watch the full video story.
Good Tired
by Kristin Armstrong in Runner’s World
There are all kinds of tired. There’s sick tired. Frustrated tired. Insomnia tired. Too much wine tired. Stressed out tired. Worried tired. Jet lag tired. Too much on my mind tired. Too much on my plate tired. Relationship tired. Need coffee tired. Eating poorly tired. PMS tired. Mentally tired.
But perhaps the best kind of tired is ‘I ran my ass off tired.’ Especially when you run your ass off with a pack of close friends on an overnight relay road trip. That’s exactly what we did, starting just after 5 pm last Saturday night and finishing at sunrise on Sunday morning. The Run the the Sun relay race is a 100 mile relay through the Texas hill country benefitting the Beyond Batten Foundation. We drove our rented RV out to Fredericksburg and ran (wee, wee, wee) all the way home to Austin.
I’m still coming down from the endorphin-girl power-good cause-sleep deprivation induced high. I’m waiting for my memories to shift and settle into a nice little diorama so that I can peer inside and tell you all about our amazing adventure. But I’m afraid that if I wait long enough for my memories to gain clarity, something may be lost in time and translation.
So here are my threaded thoughts.
The wind, whipping at high speed, drying my sweat before it had a chance to soak me, causing chapped lips, a parched throat and chafed thighs. Running my first leg, my friends yelling encouragement and handing me water out the window of our RV and follow car. Screaming and singing and handing water to my friends. Driving an RV for the first time, feeling like a road warrior. Olay face wipes qualifying as a shower. Hanging my jog bra on the RV kitchen cabinet knob to dry while I wore another one for my second leg, then switching again. The stench of the RV septic system until Beth found some miracle blue something to pour down there. Speaking of stench, passing a sheep farm – Lord have mercy. Wildflowers, fields of yellow and red bloom. Dead snake. Paige, faithful leader, jumping out in solidarity with anyone on a terribly hard hill. Pace charts, elevation charts, driving matrix. Breakfast tacos – spinach, egg, black bean on corn tortillas. Slap happy fits of laughter with Dawn. Seeing my daughter Isabelle and her friend Anna, working at an aid station late at night, swirling her in a giant hug, and getting a bouquet of picked wildflowers. Telling stories, having enough time to finish conversations. Scary scary dark, headlamps, clip on red blinky lights, reflector vest, knuckle lights, police escorts, orange cones. Breathing through my fear and overcoming it. Paige and Courtney singing the Mama Mia soundtrack in the middle of the night, knowing full well I hated that movie. Crawling into the upstairs nook above the driver in the RV, hugging my pillow with sweaty arms and face, and passing out. Seeing my children and their homemade sign at the finish line. Hugging them and my parents. Cheering Paige, our final runner, and watching her run in, surrounded by a pack of children. Coffee, eggs, pancakes, and gospel music at the finish party. Seeing the family we ran our hearts out for. Massage tables on the grass under the trees. My kids making goofy faces at me under the face cradle. Grace’s sign on the bedroom door, “Mommy Sleeping. Do Not Enter Until Later.” My glass of red wine at dinner, which tasted like accomplishment.
That’s the kind of tired I mean.
The kind of tired that means you are depleted, but far from empty.
Watching each of my friends working so hard, churning up hills that made my legs ache just from pushing the gas pedal, made me burst at my emotional seams. These are the people I rely on, and I got to see them under pressure, exhausted, relentless, and beautiful – giving every last reserve without complaint.
Charlotte, our friend and the mother of the little girl with Batten disease, said at the finish line that she felt “more blessed than burdened.” If she feels this way,if SHE feels this way, how much more honored and humbled are we who got to run and carry just a tiny little piece of that burden?
It’s a good tired.
Run to the Sun Relay helps children with Batten disease
By Melissa Gale on KVUE
Published on April 19, 2012
If you are looking for a physical challenge and a way to help out children in need, we have an event that will interest you.
The Beyond Batten Disease Foundation is hosting its Second Annual Run to the Sun Relay.
Batten disease is a fatal neurodegenerative disorder that strikes young children.
Lance Thompson and Paige Alam are co-chairs of this year’s relay. It takes place at the end of the month. They spoke to KVUE about the event.
Tech fraternity hosts Robert Earl Keen concert to help Austin foundation
by Laura Waltzer in Lubbock Avalanche Journal
published April 12, 2012
Texas Tech fraternity Sigma Nu will host a charity concert, Rattlesnake Roundup, headlining Texas country artist Robert Earl Keen tonight to raise money and awareness for the Beyond Batten Disease Foundation.
“Every day has to count; every day is a gift,” resounded in Brett Hartig and Kyle McAlonan’s hearts as they learned about the Benson family and their daughter, Christiane’s, struggle with Batten disease, a rare inherited neurodegenerative disorder, while watching the foundation’s promotional YouTube video last Christmas.
Moved by the Benson family’s story, Hartig and McAlonan, president and rush chairman, respectively, of the fraternity, vowed to create the concert.
Keen, with openers The Benton Leachman Band and Haden Burchard, will perform from 6 to 10 p.m. at the Lonestar Amphitheater. Tickets cost $20 in advance or $25 at the door.
Early symptoms of Batten disease show between the ages of 5 and 10, and include seizures and vision problems.
Symptoms evolve from personality or behavioral changes to blindness; physical and mental incapacitation, resulting in 24-hour care; and ultimately lead to death by late teens or early 20s.
The disease, occurring in every two to four children out of 100,000 births, is a common name of a group of conditions known as neuronal ceroid lipofuscinoses (NCLs), and without any known treatments.
Beyond Batten Disease Foundation was created in 2008 by Craig Benson, father of Christaine, to research the treatment and cure, as well as health screening for families who might carry destructive illnesses similar to Batten.
“Since Batten disease is so rare, the government will not fund any type of research,” Hartig said. “When Benson’s daughter was diagnosed, he began the foundation in search of hope for his family and any others who are suffering from this disease. Sigma Nu is proud and honored to help with this organization.”
With a majority of members from the Austin area, where the Benson family lives, Hartig said the cause remains important to the group of young men.
Though a majority of the foundation’s funding comes from private donors, Hartig said the fraternity feels blessed to contribute to the research, referring to their event as a drop of water in a big pond.
“I know in terms of dollars, what we’re contributing is nothing compared to the amount others donate,” Hartig said, “but I think it’s more than that. It’s the fact that a West Texas fraternity is focusing on this amazing foundation that’s going to change so many lives. Our support and the awareness we’re raising means more than the money we’ll donate.”
Besides research for a cure, the foundation focuses on screening tests for family members. Since a majority of NCLs diseases occur through genetic inheritance, the foundation is fighting to promote a service that will help families detect genes which could ultimately cause over 600 life-threatening diseases.
Batten disease, for instance, only occurs if both parents remain carriers for the illness. Though being carriers does not necessarily mean their child would be affected, the foundation hopes screening tests will provide parents knowledge of potential diseases.
Benson, also CEO of Rules-Based Medicine, a biomedical corporation that contributes to the research of treatment and a cure for Batten disease, said he and the foundation are honored for the work of Sigma Nu.
“This event is a beautiful example of an extended community that has enabled tremendous progress to find a treatment or cure, as well as developing tests,” Benson said. “These guys are a real blessing for my family and our foundation. We’ll be forever grateful.”
The Benson family, who has known about their daughter’s disease for 3½ years, rallies around a national and international support system. Describing the news of his daughter’s diagnosis as a blow to the family, Benson said their strong faith and progress through the foundation gives them hope for the future.
Because of the rarity of this disorder, Benson said families rely on each other, giving tips and support in ways doctors cannot provide.
“They understand what it’s like to have a child deteriorating right before your eyes,” he said. “They can provide comfort and ideas in a way no other person can.”
That camaraderie inspires the success of the Beyond Batten Disease Foundation, driving all those involved to make a difference to the small community of families who live with the disease.
For more information regarding the research and foundation, visit www.beyondbatten.org.
2nd Annual “Run to the Sun” Overnight Relay Expanded to Accommodate More Runners
Austin, TX — March 28, 2012
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
- Become an event sponsor
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.
Run to the Sun overnight relay raises money for Beyond Batten
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.
Recap: Beyond Batten Disease Foundation’s Date Night With Keith Urban
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/
Circuit of the Americas Brings in Significant Dollars for Local Charity
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
Date Night With Keith Urban Benefits Beyond Batten Disease Foundation
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.