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by Neissa on iGnite

During March I was invited to join a team for a philanthropic relay called Run To The Sun. The event was created to support and raise money for an Austin-based non-profit organization called Beyond Batten Disease Foundation. The founders, Charlotte and Craig Benson, are the parents of their precious nine year old daughter, Christiane, who, in 2008 was diagnosed with Batten’s Disease, an extremely rare, neurodegenerative genetic disorder whose first symptom is vision loss. Knowing the event was for a noble cause, I instantly knew it was something I wanted to participate in, however the specifics sounded down right brutal. Let me explain.

First, the event starts at Enchanted Rock in Fredericksburg on a Saturday afternoon and ends at Mt. Bonnell on Sunday morning. Second, with eight team members, each are responsible for running two legs (as few as three miles and as many as eight). Third, eleven out of the sixteen legs are run in the dark. Forth, the terrain is extremely hilly. Fifth, in theory sleep is possible, but in reality, it doesn’t happen.

Despite the undesirable factors, I enthusiastically agreed to join the team simply because: it was something I had no business doing and second, it would stretch me way outside of my current physical and mental comfort zones, and outside of having a baby and becoming a parent, it had been a while since I had “mixed it up” and challenged myself in such a way. While I once considered myself a runner, I now rarely run the three mile loop at Town Lake. Furthermore, I never run hills, and with a busy toddler, a busy life and teaching 6:00 a.m. iGnite classes, losing a night of sleep was not a good idea. After all, I know that sleep is the fountain of youth, so again, there wasn’t one part of the relay that made logical sense, expect that it benefited a tremendous cause and wonderful family.

As a result of agreeing, two weekends ago I joined my team, “The Batten Butterflies”, along with twenty other teams, to hit the hilly pavement and do something that to most people seems ludicrous.

Without detailing the entire twenty-two hours, I’ll summarize by saying that I’ve never been so thankful to participate in a single event than having participated in the Run To The Sun. While it was extremely challenging and exhausting, it was incredibly exhilarating, hysterical, and fun! Yes, I had to run (and walk) up many hills against a strong wind, one of which was past a never ending sheep farm that smelled so disgusting that my teammates, who often drove alongside me, had to drive past me in an effort to avoid throw up. And yes, I had the last leg that while even in my neighborhood, I missed a turn which temporarily took me off course and increased my overall distance. However, despite the physical and mental fatigue, I would do it over and over again! In addition, I made new friendships with fabulous women and we now have a strong bond that we’ll always share, much like those created within iGnite.

After having experienced the bliss from the Run To The Sun, it reminded me how much my spirit needed to be entirely uncomfortable and set free. And while I need and love my current routine, it was liberating to “mix it up” and do something that was crazy and somewhat scary.

As adults, we are sometimes handcuffed to our routines due to life and our children’s schedules, and sometimes we are even handcuffed as a result of our limited mindsets, self-made boundaries and habits. However, this week I encourage you to “mix it up” and try an iGnite class, time, location or leader that you’ve never experienced before. If not, maybe you take the same classes but walk, run or swim a little faster, lift a little heavier, jump a little higher or stretch a little deeper. In addition, I encourage you to take the advice we often give our children which is, “you never know until you try.” For me, had it not been for participating in the Run To The Sun, I probably wouldn’t have been bitten by the running bug again, met new and endearing friends, and felt the sense of satisfaction that I had been longing for.

One of my favorite quotes is “life begins at the end of your comfort zone” therefore, I hope you’ll be inspired to mix it up and try something new by watching this week’s video, which showcases the Casis Elementary Team running in the Run To The Sun.

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.

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.

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.

http://www.kvue.com/story/news/local/2014/05/21/2308922/

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.

http://lubbockonline.com/entertainment/2012-04-12/tech-fraternity-hosts-robert-earl-keen-concert-help-austin-foundation#.UCLC_6NQSFI

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

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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/