Newsroom Archives: Press Releases

How far would you run to save a life? Ten miles? 26.2? Even 50? In late April, 25 teams of runners will run more than 90 miles in a spectacular overnight journey to raise money and awareness for juvenile Batten disease, a rare, fatal, neurodegenerative disease that affects children.

Run to the Sun Relay is an overnight, long distance relay that starts each year at Enchanted Rock State Park and ends at Murchison Middle School in Austin, Texas. The 4th Annual Run to the Sun Relay will begin on April 26, and will end with a sunrise celebration and 2K Fun Run on April 27. We expect over 400 people to participate. We encourage all participants and their families, and friends of Beyond Batten Disease Foundation to join us at the sunrise celebration breakfast held at the Murchison Middle School track. We will stand together at sunrise to acknowledge the strength of all those affected by Batten disease and envision a world where this devastating disease no longer exists.

Run to the Sun was created four years ago by the parents of an Austin fifth grader with juvenile Batten disease. Each year, her teachers and family friends form teams to run, and her friends from school work as volunteers during the race. This is a remarkable story – about an unusual race and an unusual family, who responded to this devastating diagnosis by working to make a real difference.

Over the past 3 years, the relay has raised almost $700,000 to support Batten disease research. This year, the foundation wants to increase our total to $1 million, and needs the support and participation of the Austin and Batten disease communities to reach that goal. Whether old or young, fast or slow, near or far, this event offers a variety of opportunities for both runners and non-runners to get involved in the fight to eradicate Batten disease.

WE WOULD LOVE YOUR HELP IN PUBLICIZING SIGNUPS FOR THIS EVENT NOW, AND IN COVERING RUN TO THE SUN ON THE DAY OF THE RELAY. We’re looking for runners to participate in the relay and for volunteers to support them as they run through the night. Our 2K Fun Run is open to people of all ages and speeds. This is a fantastic opportunity for many kinds of coverage, including a fun way to keep New Year’s fitness resolutions, a medical story, an education story about the involvement of local teachers, or a live shot on the night of April 26 or the morning of April 27.

To learn more about Run to the Sun, please visit www.runtothesunrelay.com or contact Mary Beth Kiser at info@beyondbatten.org or 512-275-2600. We are happy to connect you with runners, with volunteers and with families affected by juvenile Batten disease.

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

Click here to watch the inspirational recap video from Run to the Sun Relay 2013.

To view this release on PR Web, click here.

NEW YORK, NY, November 6, 2013 – The Alzheimer’s Drug Discovery Foundation (ADDF) announced yesterday the launch of its newly expanded ADDF ACCESS program to provide scientists in academia and small biotechnology companies with access to a virtual network of drug discovery experts and contract research organizations (CROs) that have experience developing therapies for neurodegenerative diseases. Through the effective selection of CROs and use of their services, researchers may be able to accelerate their research and bring novel therapies to patients faster.

“The ADDF is excited to expand the availability of this valuable resource for the scientific community,” said Howard Fillit, MD, executive director and chief science officer of the ADDF. “Our mission at the ADDF is to accelerate the discovery and development of new Alzheimer’s drugs. Drug discovery is a true interdisciplinary effort and ADDF ACCESS seeks to connect scientists with the diverse range of resources and services they need to expedite their research.”

ADDF ACCESS now gives academic and small biotechnology research communities access to a network of more than 130 CROs and the services they provide. The expanded and redesigned portal allows users to customize their search for CROs and access a virtual network of drug discovery experts who can provide guidance on CRO selection and research design.

To make this resource available to the broader community and promote collaboration between scientists working on different neurodegenerative disease, the ADDF is building a consortium of nonprofit partners. BrightFocus Foundation and Beyond Batten Disease Foundation (BBDF) have already provided support for the expansion of ADDF ACCESS.

“When budgets are tight, efficient networking and collaborations are key to research successes,” said Guy Eakin, PhD, vice president of scientific affairs at BrightFocus Foundation. “We’re proud to partner with ADDF to accelerate Alzheimer’s drug research through the sharing of critical resources.”

Danielle Kerkovich, PhD, principal scientist of BBDF, said, “We are thrilled to be a part of ADDF ACCESS, helping close the gap between discovery and treatment. With so many Americans, both young and old, facing the threat of serious neurodegenerative diseases, we must bring together the brightest minds, highest quality of resources, and the most experience to save time, money, and lives.”

The expansion of ADDF ACCESS was launched in conjunction with the 5^th annual Partnering for Cures meeting in New York City. The ADDF ACCESS program was selected as an Innovator Presentation and was presented on Tuesday, November 5, 2013 10:45 – 11:10 AM EST.

About the Alzheimer’s Drug Discovery Foundation (ADDF)

The mission of the Alzheimer’s Drug Discovery Foundation (ADDF) is to accelerate the discovery of drugs to prevent, treat and cure Alzheimer’s disease, related dementias and cognitive aging. The ADDF has granted nearly $60 million to fund 400 Alzheimer’s drug discovery programs and clinical trials in academic centers and biotechnology companies in 18 countries. For more information, please visit www.AlzDiscovery.org.

Press Contact:

Michael Grela: +1 212 594 5500 or mgrela@KYNE.com

HOPE Under the Stars began as a grassroots event for The Will Herndon Fund for Juvenile Batten Disease Research 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 the devastating and fatal condition Juvenile Batten Disease affecting then, 6 year old Will Herndon, of The Woodlands.   This year, expecting a crowd of more than 700 guests, the 5^th Annual HOPE Under the Stars event will be held at a new venue 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 21, 2013.   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 and honor Charlotte and Craig Benson for their work in establishing Beyond Batten Disease Foundation.  A live auction will follow the presentation.  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 in a photo booth 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.  Sponsorships and tickets are available at www.willherndon.org or by calling 409-454-9330.

“Our mission is simple: Find a treatment to SAVE WILL.  We started HOPE Under the Stars in November 2009, in The Woodlands, to assist in fulfilling our mission.  Each year since, this event has grown, providing the means to accelerate research into a treatment and a cure for Juvenile Batten Disease,” said Missy Herndon, Will’s mom, Fund founder.  “We are in a literal race against time to save Will and hundreds of children like him.  Private funding is crucial to meet our mission.  The Woodlands, Houston and Austin communities are helping to make that possible, having contributed nearly $2 Million to date. We are so grateful and full of promise that a treatment is on the horizon”

Beyond Batten Disease Foundation supports research to treat and cure Batten disease, which is a rare, fatal, inherited, neurodegenerative disorder that strikes young children, including 10 year old Will Herndon of The Woodlands.  The condition initially causes blindness and seizures, progressively impairs cognitive and motor capacities, and then ultimately results in death during the late teens or early twenties.  The Foundation recently co-funded a research library where eleven drug discovery centers across the globe will share promising drug compounds that could treat neurodegenerative disease like Batten disease, Alzheimer’s and Multiple Sclerosis.

Craig and Charlotte Benson of Austin created Beyond Batten Disease Foundation in 2008 after their daughter, Christiane, was diagnosed with Batten disease.  In 2009, Wayne and Missy Herndon launched The Will Herndon Fund as part of the Foundation in honor of their son, Will.  For more information, visit www.willherndon.org.

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Ten year old Will Herndon (center), suffering from juvenile Batten Disease and the inspiration for The Woodlands’ HOPE efforts with a few HOPE Under the Stars. Committee Members preparing for an evening of friendship and HOPE:  (L-R) Julie Lile, Angela Gibbs, Nicole Murphy (Event Chair), Will Herndon, Missy Herndon (Will’s Mom and Fund Founder), Carey Bell, DeAnn Guidry, Stevi Venable

Ascend Learning announced it has delivered a $17,710 grant to Beyond Batten Disease Foundation (BBDF), an Austin, Texas based nonprofit focused on developing a test to identify and then treat rare chromosomal diseases. The grant was provided by Ascend Learning’s corporate foundation, the Ascend Transforms Foundation.

“Our corporate foundation is focused on supporting organizations that are seeking transformational change within their field. Beyond Batten Disease Foundation is bringing light to an area that is so often overlooked – rare diseases – and creating a foundation on which future treatments and potential cures can be pursued,” said Essie Eisenfeld Davis, Senior Vice President of Human Resources at Ascend Learning.

“We are grateful for the support of Ascend Learning and its employees. Over the past few years we’ve been able to cross some major milestones in the fight against Batten disease,” said Craig Benson, founder of BBDF. “This grant helps us take an even more strategic approach and apply both greater rigor and resources to our work, ensuring that the most important research to treat and cure this horrific disease gets funded.”

Beyond Batten Disease Foundation was founded by Craig and Charlotte Benson in 2008 after their daughter, Christiane, was diagnosed with Batten disease when she was just five years old. Batten disease is a rare and devastating disease that disproportionately impacts the very young. BBDF seeks to raise awareness and money to accelerate research to find a cure, and develop an inexpensive blood test to detect the gene mutations that indicate Batten disease and more than 600 rare diseases. Dr. Stephen Kingsmore, Director of the Center for Pediatric Genomic Medicine at Children’s Mercy Hospital in Kansas City, Missouri, is advancing the foundation’s initial work.

Ascend Transforms Foundation raised money by issuing a challenge grant to its employees, pledging to match dollar-for-dollar every employee donation. During the employee fundraising drive, Craig Benson visited Ascend Learning’s Kansas City-area campus to personally make the case for supporting Beyond Batten’s mission.

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About Ascend Learning
Ascend Learning is a leading provider of technology-based educational, curriculum and assessment solutions for healthcare and other vocational industries, and specializes in delivering high-performance results for students and professionals. Ascend’s heritage is rooted in assessment and remediation technology and publishing, with industry-leading products that serve secondary, post-secondary, and professional education markets in nursing, allied health, emergency services, fitness and many other health-science professions. Ascend’s family of companies consists of ATI Nursing Education, Jones & Bartlett Learning, ATI Allied Health, Advanced Informatics, National Academy of Sports Medicine (NASM), National Healthcareer Association (NHA), Boston Reed, ClickSafety and ExamFX. With approximately 1,000 employees, the company shares dual headquarters in the Boston and Kansas City metropolitan areas. For more information please visit www.ascendlearning.com.

About Beyond Batten
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.

Join Beyond Batten Disease Foundation June 1-2 in raising awareness and education about juvenile Batten disease

AUSTIN, Tex. May 31, 2013 – In recognition Batten Disease Awareness Weekend June 1-2, 2013, Beyond Batten Disease Foundation (BBDF) would like to invite communities everywhere to become learn more about the struggles and challenges of children affected by Batten Disease.

Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of five and 10, when parents or physicians may notice that a previously normal child has begun to develop vision problems or seizures. 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. Eventually, children with Batten disease become blind, bedridden, and physically and mentally incapacitated, requiring 24-hour care. Batten disease is always fatal, often by the late teens or twenties.

It is difficult to imagine a worse fate for a child, but with your support, there is hope. In August 2008, Craig and Charlotte Benson established Beyond Batten Disease Foundation after their then five-year-old daughter was diagnosed with the disease. BBDF is uniquely positioned to accelerate the pace of progress towards developing treatments, and one day, a cure, for Batten disease. Our founders and board members have extensive contacts and relationships in the scientific and medical research communities. As a result, we have made exciting progress in the five years since the foundation’s inception. We have developed an easy and inexpensive test to prevent Batten and hundreds of other rare and devastating diseases, which recognized on Time magazine’s Top Ten Medical Discoveries in 2012. We have also created a strategy for success modeled after and advised by the most successful medical research foundations and government programs which will allow us to continue to invest in research projects and strategies that are accelerating progress toward a cure.

BBDF would like to use this weekend to raise awareness and educate others about Batten disease. We encourage the Batten patient community and the public to get involved by sharing education resources, promoting awareness via social media and donating to help us continue our progress in Batten disease research. Together, we can create a brighter future for children with Batten disease.

BBDF is a 501c(3) non-profit organization dedicated to improving the lives of children with Batten Disease. For more information, visit www.beyondbatten.org or follow us on Facebook www.facebook.com/BeyondBattenDiseaseFoundation or Twitter www.twitter.com/BeyondBatten.

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Beyond Batten Disease Foundation is pleased to announce its 3^rd Annual Run to the Sun Relay that will take place April 20-21. Run to the Sun is an overnight, long distance relay that begins at Enchanted Rock State Park and ends at Laguna Gloria in Austin, Texas. This event has opportunities for both runners and non-runners and is sure to be a great experience for all.

25 to 30 teams of five to 10 advocates will run over 90 miles throughout the night to raise money and awareness for Batten disease. Each relay team is working together to raise $5,000 to benefit Beyond Batten Disease Foundation in their quest to accelerate research and find a cure for Batten disease. The race starts at Enchanted Rock the afternoon of Saturday, April 20^th and the finish line will be a celebration breakfast with food and entertainment. Runners, volunteers and supporters will stand together at sunrise while we celebrate the strength and determination of those impacted by Batten disease.

The relay race consists of 15 legs. Relay teams will meet their runners at exchange stations at the end of each leg to “pass the baton” to the next runner. This year, for the first time, each leg of the relay race will be dedicated to a child affected by Batten disease. Teams will have the opportunity to read biographies and view photos of each child as a way to get to know the children they are running for.

For those who don’t consider themselves runners, but still wish to participate, Run to the Sun has plenty of opportunities to be involved. Over 120 volunteers are needed to help the race run smoothly. Volunteer groups are needed to run the exchange stations that will serve as a place for teams to gather and support their runners at the end of each leg. Volunteers are also needed to help with set-up and tear-down, route support and start and finish activities.

Another way to participate with Run to the Sun Relay is through a sponsorship. Run to the Sun relay is still in need of sponsors for the starting line and each of the exchange stations. In return for their generosity, sponsors receive branding and recognition on all marketing and communication collateral, on-event signage, the Run to the Sun website, media exposure and more.

Batten disease is an inherited, neurological degenerative disorder that primarily affects children. It strikes without warning, starting with vision loss and seizures, progressively impairing the child’s cognitive and motor capacities, and ultimately takes their lives. It is difficult to image a worse fate for a child, but with your leadership and support there is hope. Join us in our mission to find a cure. For many families, this is truly a race against time.

To learn more about getting involved with the race, either as a runner, volunteer, sponsor, or just to make a donation, please visit www.runtothesunrelay.com. If you have any questions, please contact Rachel Armbruster at 512-944-3417 or runtothesun@beyondbatten.org.

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

Collaborative CNS Screening Initiative (CCSI) Aims to Share Knowledge and Speed Drug Discovery.
The Alzheimer’s Drug Discovery Foundation (ADDF), Beyond Batten Disease Foundation (BBDF) and the National Multiple Sclerosis Society today announced a funding collaboration to support the creation of the Collaborative CNS Screening Initiative (CCSI), a central repository of chemical compounds that have shown significant Central Nervous System (CNS) activity.

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AUSTIN, TEXAS (February, 2013) The Batten Disease Support and Research Association (BDSRA) and Beyond Batten Disease Foundation (BBDF), working together in close partnership with more than 20 other nonprofits around the world, today announced grants totaling almost $1 million for research to develop treatments and a cure for Batten disease.

Batten disease is a rare and fatal neurodegenerative disorder that strikes infants, children and adults. There is no known treatment or cure. Those born to parents who carry gene mutations for Batten disease are at risk to inherit the condition which can cause vision loss and seizures, progressively impairs cognitive and motor capacities, and ultimately results in death.

Funding for research has been challenging due to the rare nature of the disease. The 2013 grants represent the largest Batten disease research collaboration to date. The new grants will support nine high-value projects at universities and institutes in the United States, Great Britain, Germany, Israel and New Zealand. The goals of these projects include:

Organizations pooling their funds for the nearly $1 million in grants include BDSRA, BBDF, Hope for Bridget, Blake’s Purpose, Our Promise to Nicholas, Fight for Nicholas, Biomarin, LLC, and Noah’s Hope – all based in the United States – along with Germany’s NCL-Stiftung and the United Kingdom’s Batten Disease Family Association. Together these organizations are funding basic discovery to identify drug targets, translate those discoveries into treatment, and prepare for clinical trial success. Expanding, improving and connecting registries will result in the world’s largest, clinically and genetically best characterized set of Batten disease patients. Exploring multiple approaches to identify biomarkers capable of measuring the efficacy of potential drugs for treating Batten disease will ensure clinical trial success.

“We are so proud of the accomplishments of all the organizations and dedicated scientists involved in this unprecedented, international effort to identify and fund research for curing this devastating disease,” said Margie Frazier, PhD, executive director of the BDSRA. “This is a great example of the whole being so much greater than the sum of its parts.”

The world’s leading Batten disease nonprofit organizations are uniting to pool funds and expertise to evaluate grant proposals based on a state-of-the-art scientific merit review process that reflects the highest standards associated with the U.S. National Institutes of Health, the European Research Council and industry-standard drug discovery processes.

“We’ve crossed a major milestone in the fight against Batten disease,” said Craig Benson, founder and CEO of Beyond Batten Disease Foundation. “Through this type of global collaboration, we can take an even more strategic approach and apply both greater rigor and resources to our work, ensuring that the most important research to treat and cure this horrific illness gets funded.”

The newly funded work will be completed at University of Texas Southwestern Medical Center, Yale University, University of Iowa and University of Medicine and Dentistry in the US; Weizmann Institute of Science in Israel; King’s College London in the United Kingdom; University Medical Center Hamburg-Eppendorf in Germany; and Lincoln University in New Zealand.

Other nonprofits joining Batten Disease Support and Research Association and Beyond Batten Disease Foundation in the fight against Batten Disease include: Catherine’s Hope for a Cure, Drew’s Hope, Hayden’s Hope, Luke and Rachel Batten Foundation, Mary Payton’s Miracle Foundation, Melissa Froio Foundation, Partnering for Cures and Taylor’s Tale in the US; Jasper Against Batten in the US and Netherlands; Beat Batten! in the Netherlands; Bee for Batten’s in Ireland; ContactPuntNCL in Belgium; NCL-Gruppe Deutschland in Germany; and Norsk Spielmeyer-Vogt Forening in Norway.

About The Batten Disease Support and Research Association

The Batten Disease Support and Research Association is the major support and research organization in North America for families who have children with the disease. Founded in 1987, the association promotes and funds research nationally and internationally, provides family services and advocacy, fosters awareness and education with the scientific, medical and caregiving community, and coordinates networks for diagnosis, medical referrals, genetic testing, and counseling. The first research grant from BDSRA was awarded in 1992 and, since then, more than $6 million in funding has been awarded. BDSRA is the largest source of private funding for family support and research into the disease. For more information, visit www.bdsra.org.

About Beyond Batten Disease Foundation

Beyond Batten Disease Foundation works to cure and prevent juvenile 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 the development of an easy, inexpensive, groundbreaking blood test to detect gene mutations that cause Batten disease as well as 600 other rare, serious and often fatal, childhood ailments. For more information, visit www.beyondbatten.org.

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Contact:
Danielle M Kerkovich, PhD
Scientific Officer | Batten Disease Support and Research Association
Principal Scientist | Beyond Batten Disease Foundation
info@beyondbatten.org
202-812-6462
www.bdsra.org
www.beyondbatten.org

AUSTIN, TX — Austin-area golfers are getting ready to take a swing at juvenile Batten disease during the Fourth Annual Brake Specialists Plus “HOPE on the Green” Charity Golf Tournament on Friday, October 19 at Grey Rock Golf Club.

The popular tournament will help raise critically needed funds for Beyond Batten Disease Foundation which works to eradicate juvenile Batten disease, a rare, inherited and fatal neurodegenerative disorder that occurs in young children.

“Hope on the Green is a great way for Central Texas golfers to enjoy a round of golf while also helping to save children’s lives,” said Jamey Whitlock, Executive Vice President, Brake Specialists Plus Total Car Care, title sponsor of the tournament. “Proceeds from the event help the foundation to continue funding live-saving research around the world to treat, cure and prevent this devastating illness.”

Although the tournament is expected to sell out again this year, registration currently remains open for foursomes as well as individual players. Participants will enjoy a fun-packed afternoon and evening at one of the region’s best golf facilities. Activities will include: lunch catered by Benji’s Cantina and dinner provided by Grey Rock Golf Club; 18 holes of golf on a stunning Texas Hill Country course designed by renowned golf architect Jay Moorish; putting, chipping, longest drive and hole-in-one contests for prizes such as TaylorMade and Titleist clubs and bags; a live auction, including memorabilia autographed by well-known sports and music personalities; and live music following tournament play.

Juvenile Batten disease occurs when parents who unknowingly carry the gene mutation for the disorder both pass it onto their offspring. Children are diagnosed when they become symptomatic, usually between the ages of 5 and 9. The illness causes seizures and progressive vision loss leading to blindness. The condition eventually becomes mentally and physically incapacitating and is fatal by the late teens or early 20s.

Because Batten disease is so uncommon, there is very little government support for research. Beyond Batten Disease Foundation funds a growing number of research initiatives in the United States and abroad to develop a treatment and cure. The foundation also has led development of a rare disease genetic test to diagnose and prevent not only Batten disease, but also more than 600 other serious – often fatal – inherited, childhood illnesses.

“All of us fighting Batten disease greatly appreciate everyone who participates in Austin’s Hope on the Green tournament – Jamey, the Brake Specialists’ team and, of course, all the golfers who come out to play,” said Craig Benson, who co-founded the foundation with his wife in 2008 after their young daughter was diagnosed with Batten disease. “The event is an important fundraiser and also helps us raise awareness of and galvanize ongoing support for our cause.”-

In recent years, the foundation has underwritten some of the world’s most promising juvenile Batten disease research. 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 drug compounds 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. The foundation also has brought in regulatory consultants to partner with the researchers at Texas Children’s Hospital in developing a path to FDA approval for a human clinical trial of the drugs.

Other foundation-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.

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).

The 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.