BBDF Blog

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.