A Brother, A Sister and the Search for a Deadly Disease’s Cure

 

Below is an article that was written at the beginning of October. It’s a great summary of Garland’s effort to help his sister, Christiane. At the time of the writing, Garland’s fundraising total was about $90,000 and we are excited to report that his total is now over $151,000!

 

Garland Benson, a freckled-face 12-year-old with a winning smile, is on a mission – one that’s very personal, but could have far-reaching implications.

He just needs a little help from 100,000 friends and strangers.

Here’s why: Garland’s 15-year-old sister, Christiane, has juvenile Batten disease, a rare, fatal, inherited neurological disorder. It’s the same disease that was responsible for the July deaths of three siblings over the course of three days in Utah.

Children with the incurable disease suffer progressive vision loss, commonly followed within a couple of years by seizures and, as time passes, the loss of motor functions and speech. That’s followed by premature death, usually in the late teens or early 20s.

In 2008, the parents of Garland and Christiane, Craig and Charlotte Benson, formed the non-profit Beyond Batten Disease Foundation (www.beyondbatten.org) with the goal of helping find a cure. Through research funded by the foundation, progress is now being made on a treatment that, although not a cure, could slow down the disease’s progression, perhaps buying time for young people like Christiane.

The foundation is trying to raise $6 million that’s needed to help hurry that research along by getting it through an expensive validation and development process so that it can receive FDA approval for clinical trials.

Enter Garland, a boy with a big heart for his sister and an understanding that small gifts can add up to extraordinary amounts if the multiplication factor is large enough.

“I decided to raise $1 million of that $6 million on my own,” he says. “If I can get 100,000 people to give $10 each I’ll have $1 million. I think we can easily do that.”

With his goal clear, Garland confidently set out in March to achieve his objective – and do whatever he could for his sister and other young people who have the same disease.

Many donors have left heartfelt messages for him, such as: “Garland, you are the sweetest, best brother a girl could have.” “You inspire me to make a difference.” “Thank you for blessing your sister and so many others.”

Garland quickly found that his self-imposed undertaking wasn’t quite as easy as he hoped, but he has persevered and so far has raised about $90,000. His optimism isn’t faltering yet.

“I think it would be amazing if we find a cure,” Garland says.

Although Batten is genetic, and families can have more than one child with the disease, Garland does not have it. He’s not a carrier either, so he can’t pass it on to his children.

Despite the disease, Christiane is a cheerleader, has joined her family on ski trips and on horseback-riding adventures, and continues to be an inspiration for her younger brother.

“It’s really cool how she can do all that stuff and not be able to see,” Garland says. “But what I’d really like is for her to be able to lead a normal life like me.”

About Garland Benson

Garland Benson, 12, lives in Texas and is trying to raise $1 million to help fund research into juvenile Batten disease, which afflicts his sister, Christiane. The money is being raised through the Beyond Batten Disease Foundation (www.beyondbatten.org), which was launched in 2008 by the parents of Garland and Christiane, Craig and Charlotte Benson. The foundation’s goal is to help eradicate the disease by raising awareness about Batten and helping to fund research that could eventually lead to a cure. Those who want to donate can text the word HERO to 501051 and $10 will be added to their next cell phone bill. Donations can also be made through Garland’s donor page on the Beyond Batten Disease Foundation’s website.

 

 

New York Stem Cell Foundation and Beyond Batten Disease Foundation Announce the Availability of Stem Cell Lines for Research

The New York Stem Cell Foundation (NYSCF) and Beyond Batten Disease Foundation (BBDF) today announce the availability of a unique and comprehensive collection of juvenile Batten (CLN3) disease induced pluripotent stem (iPS) cells. The two organizations partnered to develop this resource for scientists around the world. The collection is a key example of BBDF’s strategy to advance therapy development for Batten disease by creating and disseminating cutting-edge tools and other resources with game-changing potential.

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BBDF Welcomes Lauren Trice as Director of The Will Herndon Research Fund

FOR IMMEDIATE RELEASE

Contact:
Missy Herndon
Founder, The Will Herndon Research Fund
hope@willherndon.org
713-557-0219

LAUREN TRICE NAMED DIRECTOR OF THE WILL HERNDON RESEARCH FUND AT BEYOND BATTEN DISEASE FOUNDATION

 

THE WOODLANDS (January 12, 2017) – Beyond Batten Disease Foundation (BBDF) is pleased to announce its recent hire of Lauren Trice, who joins the team as the Director of The Will Herndon Research Fund. In this role, Trice will oversee the management, development, and operations for the fund.

“I am honored and humbled to serve during a critical time for the research of juvenile Batten disease,” says Trice. “I believe that with the continued support of our community, we will raise awareness and funds to accelerate the research for a treatment or cure.”

Trice, a resident of The Woodlands, comes to BBDF with experience in various marketing and public relations capacities since 2006. Most recently, she served as the Corporate Market Director for the American Heart Association (AHA) in Montgomery County. In this role, she was awarded the Rome Betts Award of Excellence, which is the most prestigious national staff award given by the AHA.

“Lauren brings a wealth of knowledge, skills and a mission-based focus to our organization that we feel confident will help us meet our ultimate goal to fund a life-saving treatment to save Will and the hundreds of other children affected with this disease,” said Missy Herndon, founder of The Will Herndon Research Fund. “Collaborative research efforts have led us to potentially one of the most promising treatments in the history of juvenile Batten disease. We are grateful to have Lauren leading the local efforts to help see this research come to fruition in Will’s lifetime.”

For more information on The Will Herndon Research Fund, visit www.willherndon.org or www.beyondbatten.org.

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ABOUT THE WILL HERNDON RESEARCH FUND

The Fund was established in 2009 by Missy and Wayne Herndon, in honor of their son Will, who was diagnosed with juvenile Batten disease at the age of 6.  This rare, fatal, genetic disease attacks an otherwise healthy child, beginning with vision loss, declining cognitive skills and seizures. Batten disease is fatal, most often by the late teens or early twenties. Our goal is to SAVE WILL, and the hundreds of other children stricken with juvenile Batten disease. We have HOPE, but we need your help in this race against time. To learn more or to get involved, call 832-610-5995, or visit willherndon.org. 

ABOUT BEYOND BATTEN DISEASE FOUNDATION

Beyond Batten Disease Foundation (BBDF) is the world’s largest nonprofit organization dedicated to funding research for a treatment and cure for juvenile (CLN3) Batten Disease. Since its inception in 2008, over $16 million has been invested in research by leveraging donations, co-funding and strategic partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in juvenile Batten Disease. Today there is a treatment in sight. BBDF funded research has discovered a drug that slows the progression of the disease in Batten models. The foundation has launched a 24 month $6 million campaign to advance the treatment to clinical trials. More information can be found at www.beyondbatten.org.

Beyond Batten Disease Foundation Announces New Funding for Metabolomics to Drive Biomarker Discovery in juvenile Batten disease

Beyond Batten Disease Foundation Announces New Funding for Metabolomics to Drive Biomarker Discovery in juvenile Batten disease

 

AUSTIN, TX –January 9, 2017—Beyond Batten Disease Foundation has launched into high gear in the new year to find ways to measure what is happening to a child’s brain in the throws of juvenile Batten disease. Children across the world are suffering from this devastating illness. The foundation has identified a potential treatment and is preparing to conduct a clinical trial this year.

Before one can conduct a clinical trial to test potential new treatments for a brain disease, one must identify harmless ways of checking up on brain cells and measuring their response to treatment. To ensure progress towards a trial is not slowed due to a lack of ways to measure brain cell responses in juvenile Batten disease, Beyond Batten Disease Foundation (BBDF) has awarded De Montfort and Oxford Universities more than $150,000 to address this problem. Investigators with a rich history of success using advanced analytic tools to measure treatment responses to cancer and other lysosomal storage diseases will apply proton (1H) NMR-linked metabolomic strategies to identify sequential changes in cell activity during disease. Once documented, these changes can be monitored during the course of a clinical trial to confirm that a drug is having its predicted effect or provide early warning signs that something is wrong. Oftentimes, measurements such as these are taken long before a patient would feel different or appear to respond to treatment.

“It is hard to discover what is happening inside individual brain cells. Unlike other parts of the body, we can’t perform biopsies or rely on blood tests to provide that information. It is very elusive.   We have awarded money to a team of researchers with 20+ years of experience and a history of success identifying trial-ready biomarkers so that we can conduct early determination of how effective treatment is while carefully monitoring safety,” said Danielle Kerkovich, PhD, Principal Scientist of the Beyond Batten Disease Foundation.

“We have high hopes because of the stellar records and years of experience of the investigators involved,” said Mary Beth Kiser, President and CEO of Beyond Batten Disease Foundation.

The award, titled “Identification of New Biomarkers for Metabolomics Classification of Juvenile Disease: A Drug-Targeting Strategy”, is part of BBDF’s portfolio to carve a path from here to a cure. The successful completion of this project has the potential to substantially accelerate efforts to treat juvenile Batten disease.

ABOUT BEYOND BATTEN DISEASE FOUNDATION
Beyond Batten Disease Foundation (BBDF) is the world’s largest nonprofit organization dedicated to funding research for a treatment and cure for juvenile (CLN3) Batten disease. Since its inception in 2008, over $16 million has been invested in research by leveraging donations, co-funding and strategic partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in juvenile Batten Disease. Today there is a treatment in sight. BBDF funded research has discovered a drug that slows the progression of the disease in Batten models. The foundation has launched a 24 month $6 million campaign to advance the treatment to clinical trials. More information can be found at www.beyondbatten.org.

Beyond Batten Disease Foundation, Noah’s Hope, Hope 4 Bridget and Batten Disease Research and Support Association Partner to Support the World’s Largest and most Comprehensive Batten Patient Registry

For Immediate Release

Contact: Angela Hale

Red Media Group

Beyond Batten Disease Foundation, Noah’s Hope, Hope 4 Bridget and Batten Disease Research and Support Association Partner to Support the World’s Largest and most Comprehensive Batten Patient Registry

Austin, TX (September 12, 2016) — Beyond Batten Disease (BBDF), Noah’s Hope, Hope for Bridget and the Batten Disease Support and Research Association (BDSRA) are joining forces to support the expansion of DEM-CHILD, a novel network of prominent NCL clinician scientists and researchers working together to collect the world’s largest and most well-characterized set of patients with juvenile (CLN3), late infantile (CLN2) and 12 other forms of Batten disease. Funding will support the continued collection of patient data in Germany, Norway, Denmark, France, Argentina, Brazil, Italy, Great Britain, Finland, India and the United States with a special focus on standardization of measurement and widespread use of the Unified Batten Disease Rating Scale (UBDRS). “We are co-funding this effort with committed partners because we believe that good and thorough patient registries that identify all of the major and minor characteristics of a disease, along with family contact information, will be critical to the planning, execution and ultimately the success of any clinical trials for Batten disease,” said Mary Beth Kiser, CEO of the Beyond Batten Disease Foundation. The UBDRS was developed at the University of Rochester Batten Center to quantify the physical, behavioral, seizure and functional aspects of juvenile (CLN3) Batten disease. Jonathan W. Mink, MD PhD, FAAN, FANA, FAAP, Frederick A. Horner, MD Endowed Professor in Pediatric Neurology and president-elect of the Child Neurology Society at the University of Rochester Medical Center, will work with Angela Schulz, MD, principal investigator and coordinator of DEM CHILD at the University Medical Center Hamburg-Eppendorf. Together and with their colleagues, Drs Mink and Schulz will add UBDRS data to DEM CHILD, further align their databases, and collaborate using the larger combined data to establish more rigorous natural history baselines for all forms of Batten disease. In the last few years, Dr Schulz has expanded DEM-CHILD from 7 countries to 18. Combined international patient registry development for control data, natural history documentation and biomarker identification is part of BBDF’s larger strategy to prepare for success in clinical trials. ABOUT BEYOND BATTEN DISEASE FOUNDATION Beyond Batten Disease Foundation (BBDF) is the world’s largest nonprofit organization dedicated to funding research for a treatment and cure for juvenile (CLN3) Batten Disease. Since its inception in 2008, over $16 million has been invested in research by leveraging donations, co-funding and strategic partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in juvenile Batten Disease. Today there is a treatment in sight. BBDF funded research has discovered a drug that slows the progression of the disease in Batten models. The foundation has launched a 24 month $6 million campaign to advance the treatment to clinical trials. More information can be found at www.beyondbatten.org. ABOUT NOAH’S HOPE-HOPE 4 BRIDGET Noah’s Hope-Hope 4 Bridget, a non-for-profit 501(c)3, was established by the parents of Noah VanHoutan, Laine VanHoutan and Bridget Kennicott, who were diagnosed Late Infantile Batten disease (CLN2) in 2009. After founding individual foundations in 2009, the families partnered in 2014 to strengthen their efforts in research and find a treatment and cure for children impacted by the fatal disease. Noah’s Hope-Hope 4 Bridget also works on awareness of Batten disease. Late Infantile Batten disease affects fewer than 450 children in the United States. Children with Late Infantile Batten disease develop normally through their toddler years, giggling, talking, and running circles around their parents. By age three, they begin to have seizures and gradually lose the ability to walk, talk, and feed themselves. Late Infantile Batten disease is ruthless. Noah passed away in March 2016, just a few weeks shy of his 12th birthday. At this time, Late Infantile Batten disease is fatal between the ages of eight and 12, sometimes longer. For more information, about Noah’s Hope visit:www.NoahsHope.com. For more information about Hope 4 Bridget visit: www.Hope4Brdiget.com ABOUT BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION The Batten Disease Support and Research Association (BDSRA) serves those with all 14 identified forms of Batten disease through patient education, family and research conferences, consultation and advocacy. For nearly 30 years, BDSRA’s committed families have funded researchers around the world who have developed the research knowledge leading to today’s clinical trials. For more information: www.bdsra.org.

Hugs for Hudson and BBDF Join Forces

For Immediate Release
Contact: Mary Beth Kiser – 512-275-2600 – mbkiser@beyondbatten.org
Amy Phillips – 614-657-7707 – amy.r.phillips1@gmail.com

Columbus Family Creates Fund to Support Research for Fatal Childhood Illness: Beyond Batten Disease Foundation Announces the Addition of Hugs for Hudson Fund, Founded by the Family of Hudson Phillips.

Austin, Texas – April 6, 2016 – BBDF is proud to welcome the Hugs for Hudson Fund. BBDF, the world’s largest funder of juvenile Batten disease research, is able to make informed decisions about research projects that have the highest likelihood of becoming therapies. When a fund is created through BBDF, founders are offered an array of projects that are in line with their goals of driving research to finding treatments and discovering a cure, and are able to apply funding to the research areas that interest them the most.

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BBDF Funds Research at Cardiff University

November 16, 2015 – Austin, TX – Beyond Batten Disease Foundation is supporting research by Dr. Emyr Lloyd-Evans and his colleagues at the School of Biosciences at Cardiff University in Wales. The project explores a new hypothesis that has implications for several neurodegenerative diseases which exhibit excess Ca2+ levels, including Batten disease, Alzheimer’s, Parkinson’s, Huntington’s, ALS and other lysosomal storage diseases.

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BBDF Funds Researcher to Study Fundamentals of CLN3 Protein

October 19, 2015 – Austin, TX – Beyond Batten Disease Foundation (BBDF) has begun funding Susan Cotman, PhD, an Assistant Professor of Neurology at Harvard Medical School and Assistant in Neuroscience at the Massachusetts General Hospital. The focus of Dr. Cotman’s study is to determine the cellular location and function of the CLN3 protein. Although the CLN3 gene and associated mutations responsible for juvenile Batten disease were discovered 20 years ago, the primary function of the protein remains elusive. Utilizing recent advances in proteomics and biochemistry along with new antibodies and cell models developed by BBDF, Dr. Cotman hopes to better understand the CLN3 protein.

The successful completion of this project will substantially accelerate juvenile Batten disease research because key reagents and information for the study of CLN3 function and dysfunction will be established. Dr. Cotman’s work will increase our understanding of CLN3, a critical step in the path towards the creation of rational, targeted therapies.

ABOUT BEYOND BATTEN DISEASE FOUNDATION

Beyond Batten Disease Foundation (BBDF) is the world’s largest organization dedicated to funding research for a treatment or cure for juvenile (CLN3) Batten disease. Since its inception in 2008, BBDF has applied over $15.5 million towards juvenile Batten disease research by direct donations, leveraging donor-funded successes, and forming strategic partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in juvenile Batten Disease. For more information, visit www.beyondbatten.org

Evotec and Beyond Batten Disease Foundation collaborate to advance emerging therapies to fight juvenile Batten Disease

Hamburg, Germany – 18 October 2015: Evotec AG (Frankfurt Stock Exchange: EVT, TecDAX, ISIN: DE0005664809) today announced an EVT Execute collaboration with Beyond Batten Disease Foundation (“BBDF”) aimed at discovering and developing new treatments for juvenile Batten (CLN3) disease, a rare, pediatric, fatal autosomal recessive neurodegenerative disorder.

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Beyond Batten Disease Foundation Kicks Off the First Family Night Fundraising Event at Schlitterbahn Waterpark and Sets the Second Event for September 2016

Austin, Texas – October 5, 2015– The Beyond Batten Disease Foundation celebrated a family-fun night at Schlitterbahn in New Braunfels in September to raise funds to find treatments or a cure for juvenile Batten disease. The waterpark was closed for the private event, giving families’ access to the park’s waterslides with no lines. Attendees also enjoyed the Skycoaster, a combination skydiving, hang-gliding thrill ride where you fly over the park.

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