Helen's Pink Sky Foundation featured during Indy 500 broadcast. What to know

Indianapolis Star

25-05-2025

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.