Batten Disease News Columns

August 4, 2022August 4, 2022

Children With CLN2 Show Eye Degeneration Despite Treatment

Batten Disease News Columns, COVID-19 Columns

Children with late infantile Batten disease on approved enzyme replacement therapy show signs of age-related degeneration in the light-sensing part of the eyes, a new study shows. The study, “Ongoing retinal ... Read more

July 28, 2022July 28, 2022

CBD Fails to Reduce Seizures in Infantile Batten Mouse Model

Batten Disease News Columns

Six months of treatment with cannabidiol (CBD) reduced brain inflammation in a mouse model of infantile Batten disease, but did not affect the frequency of seizures or the survival of ... Read more

July 21, 2022July 21, 2022

Psych Meds May Cause Hyperthermia in Juvenile Batten Patients

Batten Disease News Columns

People with juvenile Batten disease may be at increased risk of developing an abnormally high body temperature when taking certain medications commonly prescribed to manage mental health issues, according to ... Read more

July 20, 2022July 20, 2022

The Long Road to the Beach to Beacon 10K, for My Sister

Batten Disease News Columns, COVID-19 Columns

At 8:12 a.m. on Saturday, Aug. 6, about three hours after the sun’s first light washes over the coast of Maine, I’ll take the first steps in the back half ... Read more

July 14, 2022July 14, 2022

‘Intriguing Link’ in Batten Synapse Dysfunction Found in New Study

Batten Disease News Columns

Batten disease-causing mutations may lead to dysfunction of synapses, the structures that nerve cells use to connect with each other. That’s according to data reported in “Transmembrane Batten Disease Proteins ... Read more

July 14, 2022July 14, 2022

List of Rare Diseases Tops 10,000 – and Is Growing – New Analysis Finds

Batten Disease News Columns

Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world. But a new analysis shows ... Read more

July 7, 2022July 7, 2022

Targeted Epilepsy Genetic Testing Drives More, Sooner CLN2 Diagnoses

Batten Disease News Columns

A targeted epilepsy genetic testing program enabled more children to receive a diagnosis of ceroid lipofuscinosis type 2 disease (CLN2) — and in less than half the time it typically ... Read more

June 30, 2022June 30, 2022

24 New CLN6 Gene Mutations Found in Patients in Middle East, Africa

Batten Disease News Columns

Two dozen new mutations in the CLN6 gene were identified in nearly 100 people, mostly from the Middle East and North Africa, with CLN6 Batten disease, a study shows. These findings ... Read more

June 23, 2022June 23, 2022

Excessive Microglia Activation May Underly Seizure Onset in CLN1

Batten Disease News Columns

The number of activated microglia — the brain’s resident immune cells — are significantly increased by the time seizures start to occur in a mouse model of infantile Batten disease, ... Read more

June 22, 2022June 22, 2022

A Father’s Ceaseless Stages of Loss After His Daughter’s Death

Batten Disease News Columns

I recently stumbled across a LinkedIn post by Joe Monaco, a business development manager at Motorola. But Joe’s words, which garnered more than 206,000 likes and 3,100 shares in just ... Read more

June 9, 2022June 9, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

Batten Disease News Columns, COVID-19 Columns

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

June 9, 2022June 20, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

Batten Disease News Columns, COVID-19 Columns

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

June 2, 2022June 2, 2022

Supporters Set to Mark International Batten Disease Awareness Day

Batten Disease News Columns

From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9. The goal of the global ... Read more

June 2, 2022June 20, 2022

Supporters Set to Mark International Batten Disease Awareness Day

Batten Disease News Columns

From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9. The goal of the global ... Read more

May 26, 2022June 20, 2022

New Study Highlights Emotional, Behavioral Challenges Due to Batten

Batten Disease News Columns

For children with Batten disease, some behavioral and emotional challenges are a response to difficulties brought on by the inherited disorder, a new study highlights. While the researchers emphasized that ... Read more