Tammy Weinke

My name is Tammy Weinke. After many years of severe illness, progressive loss of mobility, repeated hypophosphatemia, and an extensive search for answers, Mayo Clinic Endocrinology has formally diagnosed me with Tumor-Induced Osteomalacia (TIO), an FGF23-mediated phosphate-wasting disorder.

TIO is a rare acquired disease in which a tumor produces excess FGF23, causing the kidneys to waste phosphate. Phosphate is essential for normal bone, muscle, and cellular energy function. Mayo has documented persistent hypophosphatemia, renal phosphate wasting, and the biochemical findings characteristic of TIO.

For me, the effects have been profound. I have gone from an active, independent life to severe limitations in mobility, positioning, endurance, and everyday activities. I now rely heavily on my power wheelchair and on my husband, Nick, for caregiving and assistance.

Getting the TIO diagnosis answered one enormous question. It also created the next one:

Where is the tumor causing it?

That search has now led to an extraordinary possibility involving my brain.

I have an intracranial tumor that has been followed for years as a presumed meningioma. With the diagnosis of TIO, Mayo Neurosurgery and Endocrinology are now considering whether the intracranial lesions are meningiomas or whether one could be a phosphaturic mesenchymal tumor (PMT)—the type of tumor associated with TIO.

A second enhancing intracranial lesion has also been identified, and Mayo plans to remove both.

On October 8, 2026, I am scheduled for a bifrontal craniotomy at Mayo Clinic to resect the tumors.

Surgery will provide tissue for pathology and should finally help determine what these tumors actually are—meningioma, PMT, or another process. If one of these lesions proves to be the tumor producing excess FGF23, its removal could potentially address the source of my TIO. We will not know that answer until surgery and pathology are complete.

Brain surgery is complicated further by another major medical event. In June, I developed a pulmonary embolism and was placed on anticoagulation. Mayo is coordinating Neurosurgery, Endocrinology, Vascular Medicine, and pulmonary considerations around surgery, including interruption of anticoagulation and management of my metabolic condition before and after the operation.

Meanwhile, our family is managing another recovery at the same time. Nick, my husband and primary caregiver, recently underwent shoulder surgery himself. He is recovering while we prepare for my brain surgery and the recovery that will follow.

There has also been an enormous victory along the way.

When we originally created this Help Hope Live campaign, one of our most urgent problems was safe transportation. My medical condition had progressed to the point that ordinary transportation was no longer workable, and we were transporting my power wheelchair separately in a utility trailer just to get me to Mayo.

Thanks to assistance, persistence, and the people who supported us, we now have a wheelchair-accessible mobility van.

That changed our lives.

I can travel with my power wheelchair and have medically appropriate transportation to Mayo and other appointments. With brain surgery now immediately ahead of us, it is difficult to overstate how important accomplishing that goal has become.

But our need for assistance did not end with transportation.

Mayo Endocrinology has documented the significant functional disability caused by TIO and the medical necessity of ongoing assistance. Our needs include medically appropriate bed and positioning equipment, mobility and wheelchair-related equipment, accessibility needs, medically appropriate transportation, caregiving and home support, medical supplies, treatment expenses, recovery, rehabilitation, and ongoing medical care.

This campaign is now about helping our family navigate that next chapter.

We will continue sharing updates here as we move through brain surgery, pathology, treatment of TIO, and recovery. We also want to share the victories, because the people who have supported us deserve to see what their help has made possible.

If you are able to contribute, your support will help with the many medical, accessibility, caregiving, transportation, and recovery expenses ahead. If you cannot donate, sharing this campaign is an enormous help.

To everyone who has donated, shared our story, helped us locate resources, offered practical help, prayed for us, encouraged us, or simply continued following our journey: thank you.

We finally have a diagnosis.

Now we are going after the tumor.

And we are hopeful that this surgery may bring us closer to the answer we have been fighting so hard to find.

— Tammy & Nick