19-05-2025
Helen's Pink Sky Foundation: Lemonade stands to raise money for Batten disease research
The Brief
A nonprofit aims to raise money for research battling Batten disease.
Helen's Pink Sky Foundation aims to help find a cure and extend Helen's life past the projected 10-12 years old.
The foundation is inviting people to host a pink lemonade stand for their fundraiser from May 30-June 1.
EDINA, Minn. (FOX 9) - A girl from Edina with a rare disease is celebrating her 4th birthday at the end of the month, and her family is asking for the community's help to fund research battling that disease.
Big picture view
With the love for the color pink in mind, Helen's parents started the Helen's Pink Sky Foundation in hopes of finding a cure and extending their daughter's life beyond the expected 10-12 years old.
As part of their first fundraiser, they are inviting people far and wide to host pink lemonade stands and raise much-needed funds for critical research from May 30-June 1.
The backstory
When Helen was around 3-years-old, her parents started to notice she was behind on her speech development, and she was clumsier than before.
Other than the slight developmental delay with speech and clumsiness, she was normal.
She started speech therapy to help with her talking, and that first day of speech therapy was the first seizure she ever had.
By the fall of 2024, Helen had two seizures and was diagnosed with Batten disease.
According to her mom, Stephanie Born, the disease is so rare that most people have no idea what it is.
The Born's realized none of the nurses Helen had at Mayo Clinic have ever treated a child with Batten disease, and she is the only child being treated with enzyme replacement therapy in Minnesota.
Scientists and researchers have a hard time getting funding or grants that would help with their research because of how rare the disease is.
There are also challenges to helping launch clinical trials for children with Batten disease, which is a barrier to funding FDA approvals for additional treatments and/or a cure.
More information can be found on the foundation's website.
