The Jansen's Foundation

The mission of The Jansen's Foundation is to bring awareness and support research in hopes of bringing about a cure for Jansen's Metaphyseal Chondrodysplasia, a debilitating skeletal condition.

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Address: 20105 Hopper Street
Elkhorn, NE 68022
Rare diseases are one of the most scientifically complex health challenges of our time. There are currently 7,000 known rare diseases, half of which affect children.

In the United States, a rare disease is defined as one that affects fewer than 200,000 Americans. While one in 10 people have a rare disease, only five percent have cures.

In the case of Jansen's Metaphyseal Chondrodysplasia, there are less than 30 diagnosed cases in the world. Five of them are in the United States, and of those five, three of them live in Elkhorn, Neb.

Researchers have been hard at work for a cure. The research has generated encouraging data in mice indicating that one of the peptides developed can be used to reverse in mice the phenotype induced by the PTH receptor with the H223R mutation. By confirmed findings in several independent experiments, it has been proven that research data are correct and reproducible.

We now have the go ahead to move forward to test the efficacy of the peptide in humans. Of course we need approvals by the FDA, which would allow researchers to perform the first tests with this peptide in humans.

Researchers are envisioning the first volunteer adult Jansen's patient to receive the peptide will be closely monitored for serum and urine parameters after each injection. Once a change in blood and/or urine parameters is seen in the adult Jansen patient, we can then apply for an amendment to the protocol so the first children with Jansen's can be given the peptide.

Our goal is to speed-up the long process to manufacture enough peptide for use in humans, to obtain all the necessary approvals, and to start the first testing in an adult patient with Jansen's disease.

All of this needs funding to help offset costs. If you are able to contribute to our cause, please donate. If not, please share our story far and wide.

A cure for Jansen's could potentially unlock cures for osteoporosis, osteoarthritis, and hypercalcemia-related diseases.

We believe a cure is possible.