Updates

September 18, 2018September 18, 2018
Researchers Use CT Scans to Monitor Long-term Brain Alterations in Sheep Models of Batten Disease

New Zealand researchers used computed tomography (CT) to measure and monitor brain alterations in sheep models of Batten disease, a study reports. Data revealed ... Read more
September 11, 2018September 11, 2018
LivaNova Launches Study to Assess VNS Therapy in Drug-resistant Epilepsy Patients

A new system of vagus nerve stimulation (VNS) therapy was implanted in the first patient with drug-resistant epilepsy as part of a global registry launched by LivaNova to ... Read more
September 4, 2018September 4, 2018
Regenxbio Moves Toward Human Clinical Trial for Investigational Gene Therapy RGX-181

Regenxbio is developing a novel, one-time gene therapy, called RGX-181, for the treatment of late-infantile neuronal ceroid lipofuscinosis type 2 (CLN2) disease, one of ... Read more
August 31, 2018August 31, 2018
Batten Disease Biomarker Research Influenced by Husbandry Conditions Among Mice, Study Finds

Husbandry conditions of mouse models of CLN3-Batten disease may influence research outcomes, such as potential disease biomarkers, a new study reports. Researchers highlight the ... Read more
August 28, 2018August 28, 2018
Nerve Cells’ Dysfunction May Contribute to Neurodegeneration in Several Types of Batten’s, Mouse Study Reveals

Two types of nerve cells — microglia and astrocytes — are dysfunctional and may contribute to neurodegeneration associated with different types of neuronal ceroid ... Read more

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FDA Accepts New Drug Application for Nayzilam Nasal Spray for Acute Treatment of Seizures
August 22, 2018August 22, 2018
The U.S. Food and Drug Administration has accepted a new drug application (NDA) for UCB’s ...
News

Motor Events in Juvenile Batten Disease Like Those Seen in Brain Injuries, Study Suggests
August 14, 2018August 14, 2018
Agitation and involuntary motor activity, which normally occurs in individuals who suffered traumatic brain ...
News

Healx Raises $10M to Speed Therapy Discovery for Batten, Other Rare Diseases
August 7, 2018August 7, 2018
Healx has raised $10 million to accelerate therapy discovery for rare diseases, including Batten disease. The company uses ...
News

Experts Create New Guidelines for Optimal CLN2 Disease Management
August 3, 2018August 3, 2018
A group of experts has created a set of guidelines to best manage late ...
News

Discovery of Natural CLN7 Model in Type of Monkey May Help Advance Understanding of Disease
July 31, 2018July 31, 2018
Researchers have found a natural model of CLN7 disease, a rare form of Batten ...
News

‘Behind These Hands,’ a Novel-in-Verse, Illustrates Affects of Batten Disease Diagnosis
July 24, 2018July 24, 2018
Award-winning novelist Linda Vigen Phillips has released her second young adult novel, “Behind These Hands,” ...

New Insight into CLN5 Protein May Help Develop New Therapeutic Strategies, Study Reports
July 13, 2018July 13, 2018
Researchers have described how the CLN5 protein — the mutation of which underlies a ...
Common Disease Mechanisms Found Between Type of Batten Disease and Form of Adult Dementia
July 10, 2018July 10, 2018
Researchers have found common disease mechanisms between a type of Batten disease and a form of ...
Progress in Gene and Cell Therapies Reason for Hope Among Batten Patients, Review Study Says
July 6, 2018July 6, 2018
Scientists Find Previously Unknown Role for Protein Linked to Juvenile Batten Disease
July 3, 2018July 3, 2018
Fruit Fly Research Examines Two Genes Involved in Batten Disease
June 29, 2018June 29, 2018
CellCept Safe, But Ineffective, in Phase 2 Study for CLN3 Disease
June 27, 2018June 27, 2018

Newborn Screening Test Shows Promise for Detecting Late Infantile Batten Disease, Study Shows
June 22, 2018June 22, 2018
Researchers have developed a new newborn screening test that uses dried blood spots to more ...
Researchers Identify 5 New Mutations Linked to Form of Batten Disease
June 19, 2018June 19, 2018
New Mouse Model of Late Infantile Batten Disease May Help Assess Potential Therapies
June 15, 2018June 15, 2018
First Batten Disease Awareness Day a Milestone to Unite Global Community, Increase Knowledge
June 12, 2018June 12, 2018

Neuron-Like Cells Derived from Patients May Offer Way to Better Understand and Treat Disease, Study Reports
June 8, 2018June 8, 2018
Neuron-like cells derived from a Batten patient’s skin cells may be a suitable way of ...
Study Provides More Insight into Early Signs, Progression of CLN5 Disease
June 5, 2018June 5, 2018
US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases
June 4, 2018June 4, 2018

News

#ERDC2018 – When Treating Rare Disease Patients, Don’t Overlook Quality of Life, Panel Urges
May 29, 2018May 29, 2018
Finding treatments and potential cures for rare diseases is crucial, but so is the ...
News

Clinical Evolution of Batten Disease in Young Adult Siblings Described in Case Report
May 25, 2018May 25, 2018
Long-term follow-up of two siblings with Batten disease unveiled symptoms of slowly progressive motor deterioration, ...
News

Protein in Specific Cells Involved in Batten Disease Neurodegeneration, Mouse Study Suggests
May 22, 2018May 22, 2018
Therapeutic approaches that target production of a protein called progranulin in specific brain cells may help ...
News

New Mutation Found in Newborn with Congenital Neuronal Ceroid Lipofuscinosis, Case Study Reports
May 18, 2018May 18, 2018
A new mutation was identified in a baby girl with congenital neuronal ceroid lipofuscinosis ...
News

‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35
May 17, 2018May 17, 2018
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both ...
News

#ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say
May 16, 2018
The European Union isn’t doing enough to protect the 30 million or so people ...

July 20, 2017July 20, 2017

North Carolina’s Indo Jax Surf Charities Helps Kids With Batten Disease, Other Special Needs

News

A small North Carolina nonprofit organization, Indo Jax Surf Charities, has recently gained attention for its set of free programs to help children with Batten disease and other special needs build self-esteem. Since launching these programs, Indo Jax has been featured ... Read more

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