A Mother’s Story


Photo by Catherine Sanderson | catherinesanderson.com
On March 28, 2008, my husband Craig and I received the devastating news that our daughter, Christiane had been diagnosed with a very rare neurodegenerative disease called Batten Disease. Batten Disease causes blindness, seizures, is physically and mentally incapacitating and is ultimately terminal by the late teens or early 20’s. Seven years later, it still takes my breath away to write all of that in one sentence.

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Tree Planting

On Saturday morning, the weather was perfect just long enough for the Bensons to share some beautiful words of gratitude and to plant the “Triangle Oak” in honor of all of you. Thanks to those of you who came out. In case you weren’t able to be with us to include your name on the river rocks that were planted with the tree, we wanted to be sure to share their heartfelt message with you:

“They say the true meaning of life is to plant trees under whose shade you never expect to sit.

And, that’s exactly what you have done for our family! In our darkest hour, YOU planted this tree and placed Christiane beneath the only shade in an otherwise desolate and barren landscape. In a selfless act of compassion and love, you have supported us with an unfailing devotion to our family. And, after 10 years of hard work, and on the cusp of a clinical trial, you should be so proud for having put Batten disease on the map! There are simply no words to express the enormity of our gratitude for everything you have done over these last years.

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Hugs for Hudson and BBDF Join Forces

For Immediate Release
Contact: Mary Beth Kiser – 512-275-2600 – [email protected]
Amy Phillips – 614-657-7707 – [email protected]

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.


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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