Nearly 700 Expected At Sept. 15 “HOPE Under the Stars Gala” In The Woodlands to Help Fight Juvenile Batten Disease

THE WOODLANDS, TX — Nearly 700 people are expected to attend one of the Houston area’s most important fundraisers on September 15, the 4th annual HOPE Under the Stars Gala benefiting the Will Herndon Fund for Juvenile Batten Disease Research (WHF).

Will HerndonThe evening event at The Woodlands Resort and Conference Center will generate critically needed funds for research to develop a treatment and cure for juvenile Batten disease, a rare, fatal, neurodegenerative disorder that affects children.

Attendees of the “Texas chic”-themed party will enjoy a night of great entertainment including mechanical bull riding, professional artist sketches, dancing and live music by The Buck Town All-Stars, the nine-piece, New Orleans-based band famous for its energizing mix of rock, soul, funk, R&B and Crescent City classics. Additionally, there will be a photo booth, casino tables, a raffle, and both live and silent auctions for fabulous items. Tickets and sponsorship opportunities are still available through the WHF website or by calling 409.454.9330.

Juvenile Batten disease is a rare but devastating illness that typically appears between the ages of five and 10. Early symptoms include vision loss leading to total blindness and also seizures. As the disease progresses, it diminishes cognitive and motor capacities – to the point where affected youngsters require 24-hour care – and ultimately causes death during the late teen years or early 20s.

Because juvenile Batten disease is uncommon – it occurs in two to four of every 100,000 children born in the United States – there is very little government funding for research to find a treatment and cure. So in August 2009, after learning that their then six-year-old son, Will, had Batten disease, Missy and Wayne Herndon of The Woodlands started the Will Herndon Fund. WHF is a directed fund of Beyond Batten Disease Foundation, launched a year earlier to raise awareness of and support research to eradicate the malady. The foundation also has been leading development of a test to detect the gene mutations that cause Batten disease as well as 600-plus other serious, often fatal, childhood conditions.

“As we approach this year’s gala, which is drawing a record number of attendees, we are more heartened than ever by the ongoing support of our friends and neighbors in the Greater Woodlands community,” said Missy Herndon. “Every dollar we raise advances the foundation’s life-saving work and gives new hope to families affected by Batten disease.”

In recent years, WHF has helped fund many of the world’s most promising research initiatives focused on juvenile Batten disease. This includes funding a team of researchers at the Jan and Dan Duncan Neurological Research Institute at Houston’s renowned Texas Children’s Hospital. The team has identified a drug combination that may improve brain function in children with Batten disease and currently is analyzing disease models to study long-term effects on progression of the illness. This includes funding a team of researchers at Houston’s renowned Texas Children’s Hospital which has identified a drug combination that may improve brain function in children with Batten disease. Currently, the team is analyzing disease models to study the long-term effects of this drug on the progression of the disease. Additionally, with funds raised from last year’s HOPE Under the Stars gala, WHF recently brought in regulatory consultants to partner with the researchers in developing a path to FDA approval for a human clinical trial of the drug.

Other WHF-funded projects include a partnership with the American Brain Foundation to create the first clinical research fellowship in juvenile Batten disease; research support at Italy’s Telethon Institute of Genetics and Medicine using robotic technology to screen hundreds of drugs for their potential to treat Batten disease; and additional research at London’s King’s College and the University of Iowa to learn more about Batten disease cell function. Each of these projects is part of WHF’s strategic plan to accelerate research for developing treatments and a cure for juvenile Batten disease.

About The Will Herndon Fund and Beyond Batten Disease Foundation

The Will Herndon Fund is a directed fund of the Beyond Batten Disease Foundation which 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 over 600 other rare but serious and often fatal childhood ailments. For more information, visit www.beyondbatten.org.

Photos: Above–Will Herndon, age 9, was diagnosed with juvenile Batten disease in 2009; Below–The Will Herndon Fund supports important juvenile Batten disease research at the Jan and Dan Duncan Neurological Research Institute at Houston’s renowned Texas Children’s Hospital.

A Mother’s Story

by guest columnist Missy Herndon

Three years ago, Missy and Wayne Herndon received the shocking news that their then 6 year old son, Will, had been diagnosed with Batten disease. Like the Bensons, the Herndons responded with a “knowing” that they had to do something to make a difference. Shortly after Will’s diagnosis, the Herndons created the Will Herndon Fund and joined BBDF to collaborate their efforts to fund research to find a treatment or a cure for their children.

The Torch of Hope

“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

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Featured Fundraiser

The Gummy Bear Gourmet Lemonade Stand

Every child loves a lemonade stand! On August 10th, five precocious children attending The Gummy Bear Gourmet cooking camp, under the direction of Ashley Crider, struck out to put their love of squeezing lemons to the test.

“Of all the fabulously clever, extravagant, and creative recipes the children were making, they liked squeezing lemons the very most. They could have juiced lemons for the full three hours”, Ashley reported.

Along with her two children, Steven age 12 and Charlotte age 10, Ashely took the children’s enthusiasm for squeezing lemons as an opportunity to teach them how to make lemonade and how to make a difference. The class lovingly gave away free lemonade at their stand on Vista Lane in West Austin while accepting donations to benefit Beyond Batten Disease Foundation.

Ashley has been a shining example of a loyal supporter and a faithful volunteer since the inception of the foundation. On behalf of BBDF, we’d like to extend our gratitude to Ashley for her continued contributions and for fostering community support among children.

Beyond Batten Disease Foundation and American Brain Foundation Launch First Clinical Research Fellowshup to Treat and Cure Juvenile Batten Disease

AUSTIN, TEXAS (June 26, 2012) Beyond Batten Disease Foundation today announced that it is partnering with the American Brain Foundation (formerly the American Academy of Neurology Foundation) to create the first clinical research fellowship for developing a treatment and cure for juvenile Batten disease. 

The “Clinical Research Training Fellowship in Juvenile Neuronal Ceroid Lipofuscinosis” is an important milestone in the fight against juvenile Batten disease because it will help translate basic research findings quickly and efficiently into medical practice, benefiting children who have the devastating, fatal illness.

Juvenile Batten disease is a rare, inherited, neurodegenerative condition with symptoms first appearing around the age of six. It initially causes vision loss leading to total blindness and then seizures. The malady progressively impairs cognitive and motor capacities, and typically results in death by the late teens or 20s.  Launched in 2008, Beyond Batten Disease Foundation supports research to develop a treatment and cure for juvenile Batten disease and also to prevent it, along with hundreds of other serious, genetic, childhood sicknesses. 

The new, two-year, $130,000 fellowship comes in the wake of declining government support for Batten disease research. Over the past five years, funding from the National Institutes of Health has decreased by 20 percent. However, there has never been a more promising time for this research, according to Danielle Kerkovich, PhD, Principal Scientist at the Beyond Batten Disease Foundation. 

Kerkovich says new, published findings significantly advance the scientific and medical communities’ understanding of the disorder. She also notes that database resources and bioinformatics (the application of computer science and information technology to the fields of biology and medicine) now provide researchers with unprecedented access to information on Batten disease-relevant topics.  Additionally, automation technology – standard in the pharmaceutical industry – has become available to academia, enabling non-commercial researchers to test thousands of potential drugs during the earliest phases of investigation.

“We’re thrilled to partner with the American Brain Foundation, especially given these developments which open new opportunities to make major headway in research to treat and cure juvenile Batten disease,” said Kerkovich. “Having pharma-grade tools will accelerate the development of lifesaving drugs from the research lab into the clinic to treat young patients.” 

BBDF/ABF Fellowship
June 26, 2012

The fellowship also is a move to cultivate juvenile Batten disease clinician scientists. American Brain Foundation fellowships attract the top research talent and provide a proven starting point for clinical scientists to build competitive careers in translational research. These fellows have gone on to receive more than $23 million in NIH funding to study diseases that affect the brain and spinal cord.  

“We likewise are excited about the fellowship with Beyond Batten Disease Foundation – it helps advance our mission which is to support vital research and education to discover causes, improved treatments and cures for brain and other nervous system diseases,” said John Mazziotta, MD, PhD, Chair of the American Brain Foundation’s Board of Trustees and Professor and Chair of UCLA’s Department of Neurology and Brain Mapping Center in Los Angeles. “It’s particularly important to support research on Batten disease and other rare, neurological disorders – the so-called ‘orphan’ diseases that don’t attract as much funding as more common ailments but that also need to be addressed.”

Financial support for the fellowship comes from The Will Herndon Fund for Juvenile Batten Research, a donor-advised fund within the Beyond Batten Disease Foundation.  In addition to the fellowship with American Brain Foundation, the Beyond Batten Disease Foundation has facilitated or funded many other ground-breaking, research initiatives including: the largest, single grant in juvenile Batten disease research history – a $2.5 million gift to Texas Children’s Hospital in Houston; the first conference focused on drug discovery for juvenile Batten disease (held in partnership with the Alzheimer’s Drug Discovery Foundation); and studies exploring new areas of investigation at leading U.S. and European universities. 

About the American Brain Foundation

The American Brain Foundation, the foundation of the American Academy of Neurology, supports vital research and education to discover causes, improved treatments, and cures for brain and other nervous system diseases. Learn more at http://www.CureBrainDisease.org or find us on Facebook. For more information about the American Academy of Neurology, visit http://www.aan.com or find us on Facebook, Twitter, Google+ and YouTube.

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 by the late teens or 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 www.beyondbatten.org.

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First Clinical Research Fellowship to Treat and Cure Juvenile Batten Disease

AUSTIN, TEXAS (June 26, 2012) Beyond Batten Disease Foundation today announced that it is partnering with the American Brain Foundation (formerly the American Academy of Neurology Foundation) to create the first clinical research fellowship for developing a treatment and cure for juvenile Batten disease.

The “Clinical Research Training Fellowship in Juvenile Neuronal Ceroid Lipofuscinosis” is an important milestone in the fight against juvenile Batten disease because it will help translate basic research findings quickly and efficiently into medical practice, benefiting children who have the devastating, fatal illness.

Juvenile Batten disease is a rare, inherited, neurodegenerative condition with symptoms first appearing around the age of six. It initially causes vision loss leading to total blindness and then seizures. The malady progressively impairs cognitive and motor capacities, and typically results in death by the late teens or 20s. Launched in 2008, Beyond Batten Disease Foundation supports research to develop a treatment and cure for juvenile Batten disease and also to prevent it, along with hundreds of other serious, genetic, childhood sicknesses.

The new, two-year, $130,000 fellowship comes in the wake of declining government support for Batten disease research. Over the past five years, funding from the National Institutes of Health has decreased by 20 percent. However, there has never been a more promising time for this research, according to Danielle Kerkovich, PhD, Principal Scientist at the Beyond Batten Disease Foundation.

Kerkovich says new, published findings significantly advance the scientific and medical communities’ understanding of the disorder. She also notes that database resources and bioinformatics (the application of computer science and information technology to the fields of biology and medicine) now provide researchers with unprecedented access to information on Batten disease-relevant topics. Additionally, automation technology – standard in the pharmaceutical industry – has become available to academia, enabling non-commercial researchers to test thousands of potential drugs during the earliest phases of investigation.

“We’re thrilled to partner with the American Brain Foundation, especially given these developments which open new opportunities to make major headway in research to treat and cure juvenile Batten disease,” said Kerkovich. “Having pharma-grade tools will accelerate the development of lifesaving drugs from the research lab into the clinic to treat young patients.”

The fellowship also is a move to cultivate juvenile Batten disease clinician scientists. American Brain Foundation fellowships attract the top research talent and provide a proven starting point for clinical scientists to build competitive careers in translational research. These fellows have gone on to receive more than $23 million in NIH funding to study diseases that affect the brain and spinal cord.

“We likewise are excited about the fellowship with Beyond Batten Disease Foundation – it helps advance our mission which is to support vital research and education to discover causes, improved treatments and cures for brain and other nervous system diseases,” said John Mazziotta, MD, PhD, Chair of the American Brain Foundation’s Board of Trustees and Professor and Chair of UCLA’s Department of Neurology and Brain Mapping Center in Los Angeles. “It’s particularly important to support research on Batten disease and other rare, neurological disorders – the so-called ‘orphan’ diseases that don’t attract as much funding as more common ailments but that also need to be addressed.”

Financial support for the fellowship comes from The Will Herndon Fund for Juvenile Batten Research, a donor-advised fund within the Beyond Batten Disease Foundation. In addition to the fellowship with American Brain Foundation, the Beyond Batten Disease Foundation has facilitated or funded many other ground-breaking, research initiatives including: the largest, single grant in juvenile Batten disease research history – a $2.5 million gift to Texas Children’s Hospital in Houston; the first conference focused on drug discovery for juvenile Batten disease (held in partnership with the Alzheimer’s Drug Discovery Foundation); and studies exploring new areas of investigation at leading U.S. and European universities.

About the American Brain Foundation
The American Brain Foundation, the foundation of the American Academy of Neurology, supports vital research and education to discover causes, improved treatments, and cures for brain and other nervous system diseases. Learn more at www.CureBrainDisease.org or find us on Facebook. For more information about the American Academy of Neurology, visit www.aan.com.

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 by the late teens or 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 www.beyondbatten.org.

approvedbattenlogo2abf-logo-color

I Wish

On Mother’s Day, I received a poem from Christiane entitled “I Wish.” There was a picture of her at the top blowing on a thistle and written with a black marker in her own handwriting, the last line read, ”I wish that there was no more Batten.” I swallowed hard knowing that this was one of those difficult moments.

Two weeks earlier, Christiane and I had gone for a walk to the hardware store to buy some birdseed. It was the first time we had ventured out so far from home on foot, and she was especially delighted that we had successfully crossed such a busy street to get there.

On our way home we stopped at a friend’s house to visit. While we were there Christiane was introduced to a woman who kindly told Christiane that she had her picture on her refrigerator and that she prayed for her every day. Christiane had a puzzled look on her face and I guessed that she might be wondering why someone she had never met was praying for her every day. So when we left, I asked Christiane if she knew why that lady said that she prayed for her, and she answered “No.”

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Mix It Up

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.

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