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Headshot of Neena Nizar2018 Nebraska Mother of the Year®

Golden Rule Grant: The Jansen’s Foundation

May 30, 2024

When 2018 Nebraska Mother of the Year®, Neena Nizar, was presented with a Golden Rule Grant for her charity of choice, she didn’t have to think twice about where those funds would be gifted. As our first ever Survivor Mother, a new recognition for the state honoree who is an inspiration as a survivor under difficult circumstances, Neena pledged those funds to the non-profit organization she founded on behalf of her two sons and the five other children in the world affected by a rare and debilitating skeletal disease (only 30 people across the globe have ever been diagnosed).

When Neena was diagnosed at 32 with Jansen’s Metaphyseal Chondrodysplasia, one of the rarest skeletal diseases in the world, she decided to fight for a cure. In 2017, she established The Jansen’s Foundation, dedicated to raising awareness and funding research for Jansen’s Disease.

In Neena’s own words:

The Jansen’s Foundation has worked tirelessly to bring about new treatments to Jansen’s Disease, a rare and debilitating skeletal disorder that affects less than 30 people worldwide. Together with researchers from Harvard University, TJF drives research and carves new pathways for rare skeletal diseases.
The Golden Rule Grant has supported the foundation’s mission and earlier this year TJF hosted the first Skeletal Dysplasia conference at Omaha Children’s Hospital, Nebraska. Internationally acclaimed experts in the field of Endocrinology, Genetics and Orthopedics from UCLA, Harvard, and Nemours Children’s Hospital, Delaware, engaged in discussions of diagnosis and pathogenesis of rare skeletal diseases.


The Jansen’s Foundation is one of the nine non-profit organizations that received a Golden Rule Grant this year. Learn more about The Jansen’s Foundation on their website, TheJansensFoundation.org. You can also support more organizations like The Jansen’s Foundation by making a charitable contribution to the Golden Rule Grant Fund below.

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Headshot of Neena Nizar2018 Nebraska Mother of the Year®