The importance of spreading awareness about Batten disease

What I've learned from my journey of advocacy and hope

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by Cristina Vargas |

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As a parent who battled hard to get my son, Juju, diagnosed with late-infantile Batten disease (CLN2 disease), I’m familiar with advocacy. Our family’s journey has revealed the importance of spreading awareness about Batten disease and the urgent need to find a cure for all children affected by this devastating condition.

The moment I received the heartbreaking news of my son’s diagnosis in 2020, my life changed forever. Late-infantile Batten disease is a rare genetic condition that affects the nervous system, causing a rapid decline in physical and cognitive abilities. Suddenly, our lives were filled with uncertainty, fear, and a deep sense of helplessness.

Amid the darkness, however, I found the strength to become an advocate for my son and an ambassador for the Batten community. Advocacy became my mission. I reached out to medical professionals, attended conferences, and connected with other families affected by the disease.

Through these interactions, I realized the importance of raising awareness. Many people, including healthcare providers, had never heard of Batten, leading to delayed diagnoses and limited support for affected families. This knowledge fueled my determination to change the narrative and make a difference.

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Supporters set to rally for Batten Disease Awareness Day on June 9

My advocacy efforts

I began by sharing Juju’s story on social media platforms, creating a ripple effect of awareness. I organized fundraisers, hosted awareness events, and collaborated with local communities to raise funds for research and support services. I joined forces with advocacy organizations, lending my voice to campaigns and initiatives to educate the public, policymakers, and healthcare professionals about Batten disease.

Through my advocacy efforts, I’ve witnessed the power of collective action. From small grassroots movements to national campaigns, our voices have grown louder, reaching corners of the world that were once unaware of Batten disease. Spreading awareness has helped families like mine find support and spurred scientific research, leading to advancements in treatment options and potential cures.

The importance of finding a cure cannot be overstated. Batten disease robs children of their childhood, gradually stealing their abilities. It’s a race against time, and every day counts. Raising awareness creates a sense of urgency among researchers, policymakers, and the wider public. We highlight the need for increased funding and resources to accelerate the development of therapies that can halt the progression of this devastating disease.

I’m filled with mixed emotions. While the journey has been challenging, it’s also been filled with hope and resilience. I’m proud of our strides in raising awareness about Batten disease, but there’s still much work to be done. Together, we can ensure that no child suffers in silence and that no family feels alone in their battle against this relentless condition.

Let’s continue to unite as a global community, raising our voices and spreading awareness. Let us champion the causes of finding a cure, advocating for better support systems, and standing in solidarity with the brave children and families affected by this disease. Together, we can make a difference and bring hope to those who need it the most.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.


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