When you suffer from MALS even walking slowly can become a challenge. Lack of nutrition causes your body’s muscles to break down. Lack of blood flow causes lightheadedness, dizziness, and sometimes fainting. But more acutely, the compression of the celiac artery causes more pain when you inhale and exhale deeply. Many MALS patients are forced to stop exercising, and some become bedridden.

In addition, dealing with unexplained symptoms and a rare diagnosis that is often one of exclusion can feel like an endless marathon. We find that patients often spend months and years going from one test to another without resolution or understanding from their clinicians. Often our mentoring focuses on taking one step at a time toward getting a MALS diagnosis, and then another long series of steps to finding the right MALS surgeon.

Getting from rare symptoms to ultimate surgery can feel like taking a Million Steps. Certainly, with MALS, running a 5K would be unthinkable. But each of us—patient and family member—can take one step at a time.

In this spirit, we hope you will consider organizing a MALS fundraiser in your community. Named “One Million Steps for MALS” the walking based fundraiser endeavors to have 500 people nationwide each year walking to raise money for MALS.