This is a quick video to nominate the amazing Batten Disease Support, Research, and Advocacy Foundation for consideration by Project for Awesome 2025.

Batten Disease is a group of 13 rare genetic conditions that affect how your body’s cells deal with waste. It’s also called Neuronal Ceroid Lipofuscinoses, and is commonly likened to “childhood dementia” in news reports.

Symptoms include seizures, loss of vision, cognitive impairment, muscle spasticity and rigidity, speech and language difficulties, and many more.

It is a fatal condition. There is currently only one FDA-approved treatment, and it is only available for a single type of Batten Disease. Research for treatments and cures is ongoing, but funding remains a major issue.

Meanwhile, families often need support to provide care for their children, which is where groups like the Batten Disease Support, Research, and Advocacy Foundation come in.

BDSRA offer support and services for families struggling to cope with this horrible disease. They’re also working to improve access to Batten-specific care through their Center of Excellence program.

Additionally, BDSRA also funds Batten Disease research and works tirelessly to spread awareness and advocate for those affected by this cruel disease.

For more info:
https://bdsrafoundation.org

https://www.ninds.nih.gov/health-information/disorders/neuronal-ceroid-lipofuscinosis-batten-disease

#p4a #projectforawesome