Golden Gate Bridge

Our Mission

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The Hypopara Research Foundation is based in Northern California. We are dedicated to advancing research of hypoparathyroidism (HPTH). Hypoparathyroidism affects ~80,000 people in the United States. It is a disease in which patients' parathyroid glands fail to produce sufficient levels of parathyroid hormone leading to low calcium levels. The Foundation is focused on raising money in order to make grants that will fund research to cure, prevent and treat hypoparathyroidism, a historically underfunded orphan disease. Hypopara Research Foundation is a Section 501(c)(3) public charity. Contributions to Hypopara Research Foundation since its formation will be tax-deductible to the extent permitted by law. FEDERAL ID# 83-2048489.

Our Story

Amanda was diagnosed with thyroid cancer after a routine checkup following the birth of her third child. Thinking cancer would be THE hurdle she would have to overcome, focus was on surgery and getting “it” out. The day after surgery, tingles around her mouth began. Within 24 hours of being home, her thumbs started to retract while watching nighttime tv, a sign she would soon find out to be tetany (intermittent skeletal muscle spasms).

Along the way, we were instructed to “just take another calcium-calcitriol, you’ll be good.” Mere days later, after complaining she was starving, Amanda found herself in a fast-food parking lot struggling to breathe, and losing function of her arms and legs as her body was in severe tentany. In a matter of minutes, she could not walk and could barely speak. The memories of that day are as blurry as they are terrifying.

This experience was the turning point that set the tone for the next two years. Amanda finally found out what calcium did, its not just for strong bones, or even teeth. To a lay person, or even nurse hypocalcemia does not mean much until its linked to calcium which allows your heart to beat, and your muscles to relax and contract. It’s the most abundant mineral in your body. Not only did Amanda lose parathyroid function post-surgery, this loss went from transient to chronic and difficult to manage. Each day, each walk down the grocery store aisle, each stressful phone conversation ate at a crucial electrolyte her body couldn’t produce. Supported by an amazing endocrinologist, she played the ever-constant game of “do we need to head to the ER right now?” Amanda and Jamie were stunned this was reality. Not only were the odds not in their favor with this rare complication, but how could there be no other solutions?

It was stunning.

Amanda spent 18 months playing a guessing game with her calcium levels. The normally functioning parathyroid acts as a traffic cop for calcium. Your blood has too little? The parathyroid says, “Go, go, go,” and produces more hormone. Need less? The parathyroid says, “Stop! Make less.” Amanda's body doesn’t do that.

In a game of tag, she chased her symptoms. If she can’t focus or think: low, take calcium. If she’s nauseated: too high, wait it out and in extreme situations, head to the hospital for an IV. Can’t pick up her daughter or trust her legs are going to continue walking: low. Muscle spasms: low. Every stomach bug takes her to ground zero of health. Each walk around the block, birthday celebration or cooking dinner comes with a cost. Sometimes it’s an extra pill, and sometimes it’s days in bed.

On a typical day, Amanda’s pill burden hovered at nine pills. She lives and experiences life needing to know where the closest hospital is — and not just any hospital. Tell the ER intake person you have hypoparathyroidism … that’s like telling them you have heartburn. This disease forces Amanda to monitor her own levels without testing equipment, and at times she must help medical professionals understand the reality of her disease and how minutes matter when you are in tetany or nearing a coma. The only way to test your calcium levels? Head to the lab … and wait a few hours.

After a year and a half of this life and a few months of convincing her insurance company, Amanda is now on Natpara — a shot of synthetic parathyroid hormones. It hasn’t solved all of Amanda’s problems, but it has kept her out of the ER. The shot comes with a black box warning, which is the toll Amanda pays for living a more stable life.

These are her options.

Amanda’s entire life has been turned inside out. Her husband, Jamie, quit his job to help with their children and drive focus to this cause. And she is one of the lucky ones. She has good insurance, local family and access to experts nationwide.

The Hypopara Research Foundation is founded out of the desperation for a better life and mobilization of research to this orphan disease so Amanda, and others with Hypopara, can not only live a long life, but also a good one.

Learn more about the disease.