BBDF Blog

By Amanda Koziel in Life in the Heights

Published September 2014

The Beyond Batten Disease Foundation is a foundation near and dear to many individuals and families in the Pemberton Heights neighborhood. Residents Craig and Charlotte Benson established the foundation in August 2008 after their then five- year-old daughter, Christiane, was diagnosed with juvenile Batten disease. Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. The family began tirelessly working with supporters in the neighborhood and beyond to find a cure for this disease and help families everywhere with children with batten disease.

The amount of progress that the foundation has made is impressive, with great strides that have been made since its inception. Beyond Batten Disease Foundation is spearheading a unique strategy that incorporates independent scientific resources with related funding organizations to drive the research into eradicating Batten Disease. Mistakes in the DNA that cause the disease have already been identified, and some researchers have even been able slow the disease in animal models. BBDF has have been able to do this more efficiently than many other groups out there, but there still is much work and research to be done.

The foundation recently developed a Beyond Batten Development Board to help collaborate and create effective strategies for reaching out more broadly to help spread the word and gain more supporters.  Resident Sabrina Brown is the current President of the BBDF and Kelley Daniel is the President -Elect. Kelley Daniel explains “It has been very rewarding to see all of our efforts during this inaugural year come together. From Team Captains, to exchange station coordinators, to kids 2k volunteers, the Development board pulled together and raised $330,000 during the Run to the Sun, which was our main fundraiser this year. I know that with each and every event that the Development Board plans, we will be able to extend our reach and raise both awareness and funds for the research that we need to find a cure.”

When asked about the Run to the Sun, which resident Lance Thompson envisioned, Chair-elect of the event Jimmy Windham explains how fun and meaningful of an experience the event is. The symbolism of running through the night and ending the race in the morning is a symbolic of defeating one of the first noticeable signs of juvenile Batten disease, which is vision loss. The Run to the Sun typically takes place in April and this past spring also included a 2K fun run that is a great way for families to volunteer together.

When asking Kelley what would be something that the neighborhood might not know about the BBDF she had some great feedback. “The Beyond Batten Disease Foundation states that its mission is twofold. First, Prevention and Diagnosis of Bat- tens Disease and, second the Treatment and Cure of Battens Disease. While Battens Disease affects a small number in the population, it is part of a larger group of neurodegenerative diseases some of which are Multiple Sclerosis, Parkinson’s and Alzheimer’s. Our work helps not only research for Battens Disease, but all other neurodegenerative diseases. Our research has revealed that all of us carry 3 and maybe more gene mutations that can cause devastating rare diseases.  So our work at the foundation is far reaching, and directly affects all of us.”

We look forward to seeing the continued progress of this foundation and all it is doing to make waves for the cure of Batten Disease.  For more information on how to support the foundation, please visit beyondbatten.org.

To view the full article in Life in the Heights, click here.

By Bob Gunner in The Paper

Published September 4, 2014

THE WOODLANDS, TX (September 4, 2014) – No treatment. No cure, fatal. These words began the movement of HOPE back in August of 2009 to save then 6 year old resident of The Woodlands, Will Herndon. His diagnosis of the rare, genetic, neuro-degenerative condition called juvenile Batten disease launched a grass roots effort that has since raised $2.5 million locally to fund the most promising research in the history of the disease. This success and progress will be celebrated at the annual Texas chic–themed gala, HOPE Under the Stars on Saturday, September 20, 2014 at The Woodlands Waterway Marriott & Convention Center.

Juvenile Batten disease is a condition that affects an otherwise healthy child with blindness, seizures and memory loss. Overtime, children lose their cognitive functions and mobility, leaving them suffering with dementia and wheelchair-bound, then bedridden. Children that formerly ran, laughed and sang, progressively lose everything. Currently fatal in the late teens or early 20’s, this prognosis is unacceptable for Will Herndon and the hundreds of children affected with this condition.

“We are so blessed to live in a community that has passion to believe that even the impossible, can become possible if you truly believe change can be made,” said Missy Herndon, Will’s Mother and founder of The Will Herndon Research Fund at Beyond Batten Disease Foundation. “I am so grateful for the tremendous support we have received from the families of The Woodlands. Our success is a testimony to the resources, love and faith each of them have shared since day one of Will’s diagnosis. There is no doubt in my mind this community is committed and a life-changing discovery will happen.”

The Will Herndon Research Fund joined forces with Beyond Batten Disease Foundation in 2009 with a shared mission: to find a treatment for juvenile Batten disease. Later that same year, the foundation funded a team of Italian researchers to focus on the disease at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital. The foundation also funded the largest grant ever designated for juvenile Batten disease research; $2.5 million. Since that time, the foundation has raised over $13.2 million for Batten research through direct donations, co-funding and sponsorships. Currently, these researchers have identified six drug compounds and are finalizing research plans to move those into clinical studies.

HOPE Under the Stars began as a local, grassroots event for The Will Herndon Research Fund for Juvenile Batten Disease at Beyond Batten Disease Foundation in the Rob Fleming Park five years ago with a mission of HOPE to help fund a treatment or cure for this devastating and fatal condition affecting Will Herndon, of The Woodlands. This year, expecting a crowd of more than 800 guests, the 6th Annual HOPE Under the Stars event will be held at the largest indoor venue in our area, to accommodate a growing crowd of continued and new supporters. The Texas chic event will be at The Woodlands Waterway Marriott Hotel and Convention Center in The Woodlands, Texas on Saturday, September 20, 2014. Doors open at 5:30 pm with a cocktail reception and silent auction. Missy and Wayne Herndon, Will’s parents, will kick-off the program at 7 pm with a research update while guests enjoy a southwestern inspired dinner. The celebration will celebrate the amazing support of The Woodlands community raising more than $2.5 million dollars since The Fund’s inception, 5 years ago. A live auction will follow the presentation and much loved New Orleans brass band, The Bucktown All-Stars, will entertain the crowd. Throughout the evening, guests will have the opportunity to ride a mechanical bull, capture the moment with a “Selfie” mirror and pose for a souvenir “butt sketch”. A special “HOPE Lounge” created especially for sports fans, will feature a cigar bar, casino tables and showcase the evening’s SEC Football game. Adjacent to the dance floor will be a “HOPE Hideaway” where guests can take a moment away from the excitement to catch up with friends, new and old. For more information, or for HOPE Under the Stars Tickets and Sponsorships, please visit: www.willherndon.org.

The Will Herndon Research Fund at Beyond Batten Disease Foundation is based in The Woodlands, TX and has multiple fundraising and awareness events locally throughout the year.

To read article on The Paper, click here.

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By Darla Hernandez on WSBT 22

Published May 8, 2014

New challenge for teen stricken by deadly disease

There’s a new challenge for a local family we have been following since 2009.That’s when 13-year-old Tyler Allman was diagnosed with a very rare terminal disease called Batten’s Disease. The toxins eat away good brain cells, causing children to lose their vision and ability to walk and speak.For the Allman family, those days are tough.
“Tyler was fine until he was in 1st grade,” said Tyler’s mother, Heather. “He played t-ball, and then he started to lose his sight and have seizures.”Tyler is now blind and wheelchair bound. Weighing 140 pounds, lifting him in and out of their minivan has taken such a huge physical toll on his mother, she now has extensive nerve damage in her arms and needs surgery.

There have even been times when Heather and Tyler fell trying to get him into the vehicle.

“I sat there on the pavement and shed a few tears until I could physically get him back up,” Heather said.

The Allman family recently started an online campaign-to raise money for a wheelchair lift for their van.

Tyler’s father, Royer, said, “I worry about my wife and my son’s safety and her transporting him and safely, doing that when I’m not around.”

The Allmans say a lot of their medical expenses are not covered by insurance, including the van lift.

“To have a simple wheelchair lift put into our van, it was $28,000. We have so many other expenses and medical equipment we need to get,” added Heather.

Time is crucial for Tyler. The disease is rapidly taking away all of his mobility.

“Tyler’s disease has a life expectancy of late teens, early 20’s, and he’s 13 now, so we don’t know how much time we have,” Royer noted.

Anyone can make a donation at any Notre Dame Federal Credit Union Branch under the name “Team Tyler.”

To donate and learn more about Tyler’s daily fight: https://www.facebook.com/beyondbatten.org

For more information on Batten Disease and to see a special Allman family video:  https://beyondbatten.org/family-stories/the-allman-family-story/

To read the article on WSBT 22, click here.

By Crystal Simmons in The Potpourri – Magnolia Edition

Published April 21, 2014

In 1998, Luke Watson was a normal kindergartner who loved Aggie sports and watching ballgames with his dad. His younger sister Rachel loved animals, jewelry and art. She could talk at nine months old and got in her first fight at 3 after a bully threatened her brother.

Almost two decades later, Luke still loves sports and Rachel still loves animals.

However, everything else has changed. At 20, Rachel can’t walk, see or talk and suffers from seizures and dementia. Her brother Luke, 21, is also blind and his speech is starting to slur. Both have nearly exceeded their life expectancy.

Every day, they get a little worse, said their mother, Melinda Watson.

Both have Batten disease, which can mentally and physically incapacitate a normal child in a few years and leads to the deterioration of the nervous system. So far, there is no cure or treatment.

“The thing about Batten disease is, it’s a horrible disease. It’s slow. It takes away a piece of them all the time,” she said.

The disease strikes about one out of 100,000 people, qualifying it as an orphan disease that is often overlooked for research and funding. Children can develop Juvenile Batten disease around 6 and suffer progressive vision loss, intellectual and motor disability, speech difficulties, and seizures. Afflicted children usually only live to be in their 20s or early 30s.

Time is of the essence for these children, said Watson. But for Rachel and Luke, it may be too late.

From the day of their diagnosis in 1999, Watson has watched as her bright active children turned into mentally and physically handicapped adults. When she taught them something, she knew they could never progress.

“You cannot regrow the cells in the nervous system,” she said. “The best we can hope for is a treatment that can stop cell death or slow its progression.”

Now, hospital beds, shower chairs, wheel chairs, adaptive clothing and adult diapers are the tools that help her get through the day.

“I cannot take care of my daughter by myself. I have to pay someone to help me. She can stand, but that’s it. She’s too heavy for me to stand up by myself. Her care is total at this point,” she said.

According to the National Batten Disease Foundation, medical care for children afflicted with the disease can cost $3-4 million over their lifetime.

Luke and Rachel Batten Foundation

In many ways, Melinda Watson and her husband Sam have been pioneers in fighting to eradicate Batten disease.

Following her children’s diagnosis, Watson established the Luke and Rachel Foundation to fund Batten research.

A former special education teacher at Lowery Elementary in Cy-Fair ISD, Watson had no idea how to start a non-profit. Instead, she found she had a talent for public speaking that opened up new avenues for her.

In the non-profit’s infancy, it averaged $150,000 a year for research and medical care for children with the disease. But these days, Watson said the non-profit has been making less as she has had to transition into a full time nurse for her children.

Now advances in research are what keeps her going. For the past several years, Watson has been combining efforts with the Beyond Batten Foundation, a Texas based non-profit funding promising research for those in the beginning stages of the disease.

“When we came on the scene in 2008, they were still trying to determine what was causing that disease. We’re still trying to determine some of that. You can’t really find a cure until you understand what’s going on in the body,” said Mary Beth Kiser, president and CEO of Beyond Batten.

Since forming in 2008, the foundation has raised over 13 million through fundraisers and donations. It takes an average of $1.3 billion and 12 years to develop an effective treatment for most diseases, she said.

With foundation funding, Dr. Marco Sardiello has been able to move from Italy to Houston, where he is conducting research at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital.

“One of the first grants we had brought them over to Texas Children’s Hospital in Houston,” said Kiser. “We had them set up lab their so they can do a lot more research and receive funding from the United States.”

Sardiello hopes to begin clinical trials on a treatment for a group of neurological diseases including Batten disease that result from the accumulation of toxic substances in the cell, which leads to cell death and disease symptoms.

The foundation has also funded a pre-conception genetic screening test that identifies carriers of Batten disease and 700 other rare diseases. It’s also being used as a diagnostic tool at Children’s Mercy Hospital in Kansas City.

The test is still not commercially available but is available upon request from the foundation.

“The problem with genetic diseases especially rare ones is that people don’t have any idea they have it. We all carry about four genetic defects and if you partner with someone with the same one you have a higher likelihood of having a child with that particular disease,” said Kiser.

Run to the Sun Relay

To raise funds for research, the foundation is holding its fourth annual Run to the Sun Relay April 26-27 in Austin.

More than 25 teams of runners from different cities and states will run more than 90 miles in an overnight journey through the Texas Hill Country.

The Watson’s will also be participating in the run with their group the LRBF Warriors. Each leg of the relay will be dedicated to a child suffering from Batten disease. A section of the relay will honor Luke and Rachel by featuring their photos and biographies.

Each year, the race raises a little over $700,000, but the foundation is striving to hit the million dollar mark this year.

For more information about juvenile Batten disease and Beyond Batten Disease Foundation, please visit www.beyondbatten.org.

To view the article, click here.

By Chris O’Connell in Alcalde

Published April 22, 2014

Christiane Benson is like any other 11-year-old. She likes cooking scrambled eggs, playing the piano, and running around outside with her younger brother Garland and their dogs. But when it comes time to read, Garland has to narrate the books .

In 2008, when she was five-years-old, Christiane was diagnosed with Batten disease and has since lost much of her vision. The rare neurodegenerative disease is also known to cause mental decline, loss of speech, seizures, and eventually, death, with no known cure. Soon after her diagnosis, her parents Craig and Charlotte founded the Beyond Batten Disease Foundation on the tenets of diagnosis, fundraising, treatment, and eventually finding a cure. The Foundation’s website refers to families’ struggles with Batten disease as, “quite literally a race against time.”

“I get to see Christiane every third day,” Larry Chauvin says, his grin audible through the phone. “It’s cool.”

Chauvin, BS ’03, is a physical education teacher at Casis Elementary, where Christiane Benson is in 5th grade. He is also team captain of a running group participating in a relay this weekend benefitting Beyond Batten, called Run to the Sun, a 90-mile race starting at Enchanted Rock around dusk, and ending at dawn at Murchison Middle School in Austin. That group has grown from eight members to 25 in less than four years, and includes numerous Texas Exes in its ranks.

His co-captain, Sheri Bryant, BS ’03, ME ’10, also has a close personal connection to Christiane. She met the Bensons at a parent-teacher meeting at Casis, where Bryant taught kindergarten at the time. She learned of Christiane’s story and thought immediately, “She has to be in my class; I have a connection with the family.” She still tutors Christiane twice a week, and she and Chauvin will be running in their fourth Run to the Sun relay, having participated in the annual race every year.

While many Texas Exes have joined Bryant and Chauvin—as many as 12, on her last count—current students and student organizations are also joining the cause this weekend, like the Texas Cowboys, who will be volunteering at a checkpoint from 1 to 3 a.m. Sunday morning.

For Zach Solomon, VP of the Texas Cowboys, it was an easy decision to become involved with Run to the Sun. He has a family friend afflicted with Batten, and his father’s company has run in the race since its inception. It was only natural that the Texas Cowboys would volunteer, though until we spoke, he didn’t know how many UT alumni and students would be participating.

“I honestly wasn’t aware of all the Longhorn presence until just now,” Solomon says. “A lot of people on campus feel the need to reach out and give back to the community, so when something unique like this run comes up, it’s hard to not get interested.”

“We engage the students,” agrees Beyond Batten CEO and President Mary Beth Kiser, BA ’90. “Last year we had a girl who put a team together with her sorority, they were Zetas. This year we went to the volunteer fair for this specific event and we found people who are coming out this year.”

Whether it is intentional or not, Longhorns past and present are coming together for this cause, despite it being one of the lesser-known neurological diseases. At the finish line, they all hope, is an end to the illness.

“I think it gives them hope,” Bryant says. “The symbol behind the race is, running through night, it’s dark, like it would be to a child with Batten as they start to lose their vision. It’s a dark diagnosis, and nobody knows of a cure, but the Bensons and Foundation are paving the way to combat this disease.”

It’s not all darkness however.

“The upside of it is you finish as the sun is coming up,” Bryant continues. “We’re getting fundraising awareness out there, and hopefully there will be a cure some day.”

To view the article in Alcalde, click here.