National Batten Disease Awareness Day

Young child holding a red awareness ribbon, wearing a superhero cape, surrounded by a bright and colorful playground scene.. — National batten disease awareness day illustration

Welcome to the wonderful world of National Batten Disease Awareness Day! This is the perfect occasion to learn about a noble cause while having some fun along the way. So grab a cup of coffee, put on your thinking cap, and let's dive into the exciting history of this important day.

When is Batten Disease Awareness Day?

It's national batten disease awareness day on the 30th March.

The Internet History: National Batten Disease Awareness Day

Every year on the 30th of March, we come together to raise awareness of Batten disease. A rare genetic disorder that primarily affects children, Batten disease causes a range of disabling symptoms, such as vision loss, seizures, and cognitive decline.

While the internet may not have played a direct role in the creation of this special day, it has certainly helped spread the word and connect people dedicated to finding a cure for Batten disease. Online communities, social media campaigns, and informative websites have all played a crucial role in raising awareness and raising funds for research and support initiatives.

This national day has become an opportunity for families affected by Batten disease to share their stories and connect with others who understand their challenges. It's also a chance for medical professionals, researchers, and advocates to educate the public about this rare condition and emphasize the importance of early diagnosis and treatment.

Did You Know?

Did you know that Batten disease was first described by the British pediatrician Frederick Batten in 1903? He identified a group of children with similar symptoms and named the condition after himself, thus giving us the name we know today. Despite being discovered over a century ago, this disease remains relatively unknown to many.

History behind the term 'Batten Disease Awareness'

1995

Discovery of Batten Disease

Batten disease, a rare and fatal neurodegenerative disorder, was first identified by British physician Dr. Frederick Batten in 1903. However, it wasn't until 1995 that the term 'Batten Disease Awareness' came into existence. The disease primarily affects children and is characterized by progressive loss of neurological functions, including loss of vision, cognitive decline, seizures, and early death. Its devastating impact on individuals and families led to the need for increased awareness and support.

1995

Formation of the Batten Disease Support and Research Association

In 1995, a group of concerned parents came together and established the Batten Disease Support and Research Association (BDSRA) to promote awareness, support families affected by the disease, and fund research efforts. The organization played a pivotal role in driving forward the Batten Disease Awareness movement and brought attention to the urgent need for a cure.

1999

Creation of Batten Disease Awareness Day

To further raise awareness about Batten disease, the BDSRA initiated the creation of a dedicated awareness day. In 1999, they successfully advocated for the establishment of the inaugural Batten Disease Awareness Day, observed on June 4th annually since then. This day serves as a reminder of the challenges faced by individuals living with the disease and their families.

2006

Global Awareness and Research Funding

As the awareness about Batten disease continued to grow, more countries and organizations joined the cause. The international community recognized the importance of research funding and collaborative efforts to combat the disease. In 2006, the European Batten Disease Consortium and the Beyond Batten Disease Foundation were among the major organizations contributing to global awareness and research funding.

2010

Unveiling of the Batten Disease Awareness Ribbon

In 2010, the Batten Disease Support and Research Association unveiled the official Batten Disease Awareness Ribbon. The ribbon, designed with purple and blue colors, represents the unity and hope within the Batten disease community. Wearing the ribbon became a symbol of support, solidarity, and a visible reminder to continue advocating for research, resources, and a cure.

2021

Digital Campaigns and Increased Awareness

In recent years, digital campaigns and social media platforms have played a crucial role in spreading awareness about Batten disease on a global scale. Families, organizations, and individuals affected by the disease have utilized online platforms to share personal stories, educational resources, and updates on research progress. These efforts have significantly contributed to increased awareness, understanding, and community support for Batten disease.