A new 3D model of the retina, the light-sensitive tissue at the back of the eye, is helping researchers uncover how vision loss may begin in juvenile Batten disease, also known as CLN3 disease, while pointing to a potential therapeutic approach to protect vision. Using the model, researchers at…
News
Treatment with cannabidiol (CBD), a non-psychoactive compound found in the cannabis plant, may have potential to help control seizures in people with late infantile Batten disease, according to new research in a mouse model of the disease. Data showed that daily CBD treatment did not improve the measured markers…
A study that found CLN7 disease, a form of Batten disease, may be more common in Latin America than in other parts of the world highlights the importance of global data, according to its authors. Differences in the types of Batten disease that are most common across regions “underscore…
Children and adults with juvenile Batten disease face more emotional and behavioral issues and have a lower quality of life than their siblings without the inherited disorder, a new study from Norway has found. Moreover, parents of those with juvenile Batten, also known as CLN3 disease and marked by…
The composition of bacteria living in the gut is altered in people with late infantile Batten disease, but these changes are likely secondary consequences of the disease rather than drivers of disease activity, according to a study done in mice. “Our data suggest the previously documented dysregulation of the…
The OrCam MyEye 2, a wearable device designed to help people with visual impairment navigate the world, may be a useful aid for children with juvenile Batten disease, though these patients often need help from their caregivers to use the device correctly, according to a small feasibility…
Most people with juvenile Batten disease meet diagnostic criteria for at least one lifetime psychiatric disorder, according to a new study based on interviews with parents of 20 patients in Norway. The most common psychiatric diagnoses reported in the juvenile Batten patients were anxiety disorders and attention-deficit hyperactivity disorder…
An international study mapped out a detailed timeline of how juvenile Batten disease — also known as CLN3 disease — typically appears and progresses, offering families and clinicians a clearer picture of the disease. When researchers compared the timing of all core disease symptoms, a clear pattern emerged:…
Miglustat, an investigational oral medication currently in early clinical testing for Batten disease, was tolerated well in a small study that evaluated the therapy in six people with juvenile Batten disease. Trial data indicate that the miglustat-treated patients had a slower rate of progression in physical impairment than…
LTS-101, a one-time gene therapy designed to treat children with late infantile Batten disease, is poised to enter clinical testing, according to an update from its developer, Latus Bio. Latus announced that the U.S. Food and Drug Administration (FDA) has granted clearance to its investigational new drug (IND)…
Recent Posts
- Processing grief so that it becomes fuel for Batten disease advocacy
- 3D retina model reveals how vision loss may begin in juvenile Batten disease
- Back-to-school season reminds me of the life my son should be living
- Missing my son in heaven brings a unique kind of loneliness
- CBD may delay seizures, shorten their duration in late infantile Batten
- Behind the Batten disease advocate is a grieving mother
- Research takes time that our children with Batten disease don’t have
- Batten disease study from Argentina shows regional data is key
- My son may be in heaven, but I will never stop being his mother
- A mother’s dream for her child with Batten disease, written across heaven