Helen's Pink Sky Foundation Launches to Accelerate Research for Batten Disease and Provide Support to Affected Families
Batten disease is a rare, genetically inherited disorder that affects approximately 2 to 4 children in every 100,000 births. Part of a group of progressive neurodegenerative conditions known as neuronal ceroid lipofuscinoses (NCLs), the disease causes devastating and life-altering symptoms such as developmental regression, seizures, blindness, and dementia. Though rare, its impact on families is unimaginable-and Helen's Pink Sky Foundation is stepping forward to change that.
Helen Born is a three-year old, happy and cheerful toddler. She became the inspiration behind the foundation after her diagnosis with Late Infantile Batten Disease (CLN2), which causes severe and rapidly progressing symptoms including seizures, vision loss, and cognitive decline. While therapies like Enzyme Replacement Therapy (ERT) can slow progression and improve quality of life, there is still no cure.
Through fundraising and donations, Helen's Pink Sky Foundation is committed to supporting world-class scientists and researchers working on gene, cellular, enzyme replacement, and small molecule therapies. By accelerating the development of these breakthrough treatments, the foundation aims not only to improve the quality and length of life for those affected by Batten disease, but ultimately to help find a cure. Equally important is our mission to support families impacted by this devastating and fast-progressing disease by raising awareness, providing essential resources, and building a strong community that drives earlier diagnoses and fuels continued research momentum.
'As Helen's parents, we can't accept Enzyme Replacement Therapy (ERT) being the only FDA approved option for helping children with CLN2. While we're thankful for ERT's ability to possibly slow progression, the end result is not something that we can imagine or accept. We are determined to fight for our sweet Helen, fund research and find a cure for CLN2 and Batten Disease. We will not let a day go by without a fight as that is what Helen deserves!' said Dan and Stephanie Born. 'Time is not on our side, we need to act quickly to move some of this promising research forward now.'
'We're committed to helping families like ours who are battling Batten disease. This is not just about finding a cure, but also about improving the lives of those who are living with this devastating disease. Today, we stand up in unity to take back what Batten rips away from the afflicted families and we start our long fight to bring back smiles, bike rides, giggles, and all the magical things that childhood should be filled with, " said Nick Schneider, Helen's uncle, a founding member of the Helen's Pink Sky Foundation, and President and CEO of Arctic Wolf, a Minnesota-based cybersecurity company.
By supporting critical research and offering practical resources, we hope to change the future for those affected by Batten disease and other neurodegenerative conditions. For more information on the Helen's Pink Sky Foundation, how you can help, or to make a donation, please visit our website at hope4helen.org.
Helen's Pink Sky Foundation is committed to advocacy, research and care for Batten Disease & CLN2. Through our platform, you can stay up to date on Helen's journey, contribute to the cause, and be a part of our growing community dedicated to supporting affected families. Together we will beat this.
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P: 202-340-0518
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Miami Herald
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