How Batten disease parents can drive change through advocacy

There is a strength that comes from walking through the storm and still choosing to speak up. Parents of children with Batten disease know this kind of strength all too well. We live it every day through the sleepless nights, the hospital stays, and the uncertain tomorrows. When we use our voice to advocate, educate, and stand up for our children, we don’t just fight for them; we open doors for countless families who will come after us.

Advocacy begins the moment you refuse to stay silent. It’s when you speak up in an Individualized Education Program meeting, question a doctor’s decision, or share your child’s story. Your voice has the power to humanize the science, connect policymakers to the reality behind their decisions, and create a ripple that becomes a wave of change.

When I first started advocating for my son, Juju, who has late-infantile Batten (CLN2) disease, I didn’t know where that journey would take me. I just knew that his life mattered, that his story deserved to be heard, and that no parent should ever feel powerless in the face of a rare diagnosis.

I began by sharing his story publicly and connecting with organizations that valued the lived experiences of families. Over time, that advocacy reached lawmakers, medical teams, and research partners who began to truly listen. What started as one mother’s voice turned into a chorus of parents demanding better treatments, resources, and understanding.

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Batten disease can test your faith, patience, and sense of control, but advocacy transforms pain into purpose. It gives meaning to the chaos by allowing you to use your experiences to guide others.

When my daughter Faith faced a difficult medical and legal situation, I advocated for her to receive fair treatment and access to the care she needed. That experience reminded me that advocacy extends to every system that touches our children’s lives.

My journey as an advocate has also been shaped by my daughter Serenity, who was born with a heart condition. Whether I’m meeting with legislators, writing articles, or mentoring new rare disease parents, I try to carry Serenity’s strength and resilience with me. She reminds me that advocacy isn’t always loud. Sometimes it’s the quiet persistence of a mother who refuses to give up, the love that keeps showing up, even when the system feels impossible to navigate.

Advocating for your child means stepping into unfamiliar territory and trusting that your voice can make a difference. It’s not about knowing all the answers, but asking the right questions. It’s about connecting with other families, joining support networks, and showing up to be part of the change. Every email you send, every meeting you attend, every story you tell helps build a bridge for the next family.

I’ve learned that one of the most powerful things a Batten parent can do is share their story to educate others. Show the world that laughter, courage, and hope still exist in the midst of uncertainty. When we humanize the condition, we create understanding, which opens doors for funding, research, and compassion.

Sometimes advocacy feels like a full-time job. There are moments when it’s exhausting and you wonder if anyone is really listening. But then something happens — a therapy gets approved, a teacher learns a new approach, a doctor calls you back just a little quicker than before — and you realize that your voice is working. The change might be slow, but it’s real.

Over the years, I’ve seen how sharing Juju’s journey has helped bring awareness to CLN2 disease and encouraged collaborations that could one day lead to better treatments. I’ve seen how standing firm for Faith helped ensure her needs were not overlooked in the legal system. I’ve seen how Serenity’s story has inspired other families to hold on to hope. Every child’s story adds to the collective force that pushes this community forward.

Being a Batten parent is one of the hardest and most sacred callings there is. We become warriors not by choice, but by love. We learn to navigate systems, advocate for services, and speak truth to power because our children’s lives depend on it. But in that fight, we also find purpose, connection, and strength beyond measure.

So to every parent walking this journey, know this: Your voice matters. It carries the power to move hearts, shift policies, and ignite change. Don’t underestimate the impact of your advocacy, even on the days when it feels like you’re shouting into the void. Someone is listening. Someone is learning. Someone is being inspired by your courage to keep going.

Our voices, when joined together, become the light that cuts through the darkness of Batten disease. We aren’t just parents; we are advocates, educators, and change-makers. And with every word we speak, every story we share, we bring the world one step closer to understanding, compassion, and a cure.

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.