Hey all .. my name is Shauny! Rare disease warrior here! I am raising funds to attend a medical seminar May 2026 in Chicago, IL. This annual event was created specifically for patients living with rare conditions like mine.

I have been diagnosed with a solitary fibrous tumor, an extremely rare disease that affects roughly one in a million people. Because this diagnosis is so uncommon, opportunities to learn directly from specialists, researchers, and other patients facing the same reality are incredibly limited. This seminar provides a chance to gain life-changing medical knowledge, connect with experts studying this condition, and build support within a community that truly understands what it means to live with rarities. Attending would mean the world to me. As well as, allow me to become better informed, better prepared, and a stronger voice in our community while I navigate this journey.