The Will Hendon Fund’s HOPE Under the Stars Celebrates 5th Anniversary and Raising Nearly $2 Million Locally for Juvenile Batten Disease

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 5th 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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committeephoto2013[1]

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 Delivers Grant To Beyond Batten Disease Foundation

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.

Batten Disease Awareness Weekend 2013

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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Nonprofit Hosting Third Annual Overnight Relay Run to the Sun Relay – April 20-21, 2013

Beyond Batten Disease Foundation is pleased to announce its 3rd 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 20th 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

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.

Download the Press Release »

Nonprofit Funders Unite to Accelerate Fight Against Batten Disease, Granting $1 Million for Research to Develop Treatment and Cure

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
dkerkovich@beyondbatten.org
202-812-6462
www.bdsra.org
www.beyondbatten.org

Austin Golfers Join Fight Against Batten Disease at Fourth Annual Hope on the Green Tournament

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.

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.

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.

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