Dr Hagemann is Investigating Sickness and Eating Issues

Many of our AxD warriors struggle with nausea, poor appetite, and difficulty growing—some of the most challenging issues families face daily. Scientific research by Dr. Hagemann is tackling this head-on.

What Might Be Causing the Problem?

Think of the brain's “helper cells” called astrocytes. In Alexander Disease, these cells get stressed and release a protein called GDF15.

This GDF15 “messenger” is a major suspect in causing nausea, appetite loss, and difficulty maintaining weight (seen in other disorders too). It’s known to travel to the brain’s center for appetite and nausea, possibly sending the signal: “I feel sick, don’t eat.”

How Scientists are Testing This Idea

With a new grant from the NIH, Dr. Tracy Hagemann is testing this theory:

Look for a Connection: Measure GDF15 levels in lab animals and people with AxD (with Dr. Amy Waldman) to see if high levels match nausea, appetite loss, or poor growth.

Calm the Cells: Test if lowering stress on astrocytes reduces GDF15 release in lab models.

Block the Signal: Try to block GDF15 from reaching the brain’s control center to see if appetite and growth improve.

The ultimate goal is to confirm the cause of these symptoms — the first step toward finding a treatment.

How You Can Help!

This research got a big boost from the NIH, but it started with our community! Initial funding from Elise’s Corner, Daniel’s Fight, and Team Max made it possible. This shows how powerful we are when we work together. Since the NIH grant only covers 1 year (and research takes many), community fundraising is critical to keep progress moving.