Latest news with #PinkSkyFoundation
Indianapolis Star
25-05-2025
- Automotive
- Indianapolis Star
Helen's Pink Sky Foundation featured during Indy 500 broadcast. What to know
A fundraiser for a rare neurodegenerative disorder affecting a four-year-old girl with a connection to racing was highlighted during the 2025 Indianapolis 500. Helen's Pink Sky Foundation was featured in a commercial shown during the race broadcast on Fox. The foundation is named for a Minnesota girl, Helen Betty Born, and raises awareness and funds research to find a cure for CLN2 Batten disease, which affects two to four of 100,000 children in the United States. The disorder is inherited. Some children die in early childhood from the disease, while others may be able to live into their teens or twenties. Worldwide, about 14,000 children are known to have Batten disease. In recognition of Helen's fourth birthday on May 31, the foundation is calling for people to host pink lemonade stands May 30-June 1 and donate proceeds to Batten disease awareness. Helen, the daughter of two cybersecurity professionals, was diagnosed with the disease in March 2025, after showing symptoms that included slight speech delays, clumsiness, eye flutters, sudden falls and shaking and experiencing seizures. Her parents started the foundation to help fund research and find a cure for the disease. Meyer Shank Racing has pledged long-term support of Helen's Pink Sky Foundation, with its NTT IndyCar Series cars driven by Felix Rosenqvist and Marcus Armstrong carrying the foundation's decal in every race until a cure is found for Batten disease. Tim Meyer, Meyer Shank Racing's chief operating officer, is Helen's godfather and a foundation board member. 'We're going to tell Helen's story everywhere we race and do our part to help this amazing little girl,' Meyer said in a news release. 'Helen is so full of life and we just find her courage so inspiring. What she now faces is evil, it breaks my heart to see a child have to take on so much. We're going to fight like hell to help her and her family in any way we can.' According to the foundation website, Batten disease is a rare, genetically inherited disorder that belongs to a group of progressive degenerative neurometabolic disorders known as the neuronal ceroid lipofuscinoses (NCLs). NCLs are characterized by genetic mutations that disrupt cells' ability to dispose of waste, resulting in the abnormal accumulation of certain proteins and lipids (fats) within the nerve cells of the brain and other tissues of the body. This results in progressive neurological impairment, including developmental regression, seizures, blindness, behavior changes, and dementia. There are many forms of NCL. Mutations in at least eight different genes are known to cause Batten disease. Helen has been diagnosed with Late Infantile Batten disease (CLN2) caused by a deficiency of the enzyme TPP1, which is responsible for breaking down certain proteins in the lysosomes. The different variants of the disease are distinguishable from one another in part by the age at which symptoms appear. Symptoms can appear as early as six months and as late as 43 years old. Children affected by CLN2, like Helen, typically see symptoms between the ages two and four and include seizures, coordination challenges, progressive vision loss, and developmental regression. Although CLN2 can be treated with an enzyme replacement therapy called Brineura (BioMarin) that dramatically slows progression of the disease, there is no cure. Batten disease is inherited through an autosomal recessive trait. This means that the same abnormal gene for the same trait is inherited from both parents. Given the disease's rarity, it is often misdiagnosed initially as epilepsy or eye disease. The accumulation of common symptoms and, ultimately, a genetic test is the only way to get a definitive diagnosis.
Fox Sports
06-05-2025
- Automotive
- Fox Sports
MSR Supporting Helen's Pink Sky Foundation
INDYCAR Meyer Shank Racing announced Tuesday its pledge to long-term support to Helen's Pink Sky Foundation, with its NTT INDYCAR SERIES cars driven by Felix Rosenqvist and Marcus Armstrong will carry the Foundation's decal in every race moving forward — and will do so until a cure is found for Batten disease. The pledge is aimed at driving awareness of CLN2 and Batten Disease which is a rare neurodegenerative disorder that affects just 2-4 of 100,000 children. This initiative holds a deeply personal significance for the MSR team and family. Three year old Helen Betty Born, the Foundation's namesake and relative of the Meyer family was born on May 31st, 2021 — the same day Helio Castroneves captured his historic fourth Indianapolis 500 victory with Meyer Shank Racing. Helen was diagnosed with Batten disease on March 10, 2025. Through devastation and heartache upon diagnosis, Helen pointed toward the pink sky which gave the Born family a sign of hope and a newfound purpose to find a cure for their little girl. "This one really hits close to home for us and we want to drive as much awareness as possible for this awful disease,' said Tim Meyer, MSR COO and Foundation Board Member. 'We're going to tell Helen's story everywhere we race and do our part to help this amazing little girl. Helen is so full of life and we just find her courage so inspiring. What she now faces is evil, it breaks my heart to see a child have to take on so much. We're going to fight like hell to help her and her family in anyway we can.' Together, MSR and the entire Born family will strive to create as much awareness as possible in hopes that a cure is found soon. "The response of the MSR team and their willingness to drive awareness for our little girl is so meaningful to me, our family and this foundation,' said Stephanie Born, Helen's Mom and Foundation Board Member. 'Our world changed dramatically not long ago and our journey ahead is a long and challenging one, but we won't lose hope, especially when it's all we have. Thank to Jim [Meyer], Mike [Shank], Tim [Meyer] and the entire team from the bottom of our heart, your support today and going forward will bring a smile to Helen's face.' Helen's Pink Sky Foundation will have its first activation May 30th-June 1st in honor of Helen's fourth birthday. The Foundation will host and encourage people around the country to host a pink lemonade stand with all proceeds going towards Batten disease research and finding a cure for Helen. For more information on how you can set up your own pink lemonade stand to honor Helen, visit recommended
Associated Press
09-04-2025
- Health
- Associated Press
Helen's Pink Sky Foundation Launches to Accelerate Research for Batten Disease and Provide Support to Affected Families
EDEN PRAIRIE, MN / ACCESS Newswire / April 9, 2025 / Today, the Born and Schneider family announced the launch of Helen's Pink Sky Foundation, a new nonprofit dedicated to accelerating research, raising awareness, and improving the lives of those affected by Batten disease. The foundation is committed to funding groundbreaking research aimed at both finding a cure for Batten disease and supporting patients and their families with essential resources. 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 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. For press inquiries: P: 202-340-0518
