Madison Bowe

Stiff Person Syndrome (SPS) affects the daily living activities of my life along with my quality of life. Other factors like my bladder, throat and other muscles have been affected. I am not able to drive and use a wheelchair. SPS has affected my life in many different ways and continues to but I don't want it to stop me. Asthma has affected my ability to participate in sports a large majority of my life. My aphasia affects my ability to understand and read information including my emails. It is affecting my ability to read menus now and order for myself at times since numbers are a language. All these conditions also affect my ability to work and go to school and even participate in normal activities with friends.

I advocate because patients deserve a quality of life. We deserve to know what are options are in our own healthcare and the decisions we can make. We can be allowed to decide how we live and should be allowed. I advocate because I want to see children growing up knowing that they are taken care of and that they have a quality of life. I want everyone to have equal access to care they need. I advocate for those of different cultures different backgrounds and with my studies being in emergency services I strive for better protocols in Fire and Emergency Services.

I am a YARR Leadership Academy graduate of the EveryLife Foundation for Rare Diseases. I serve on the NV Rare Disease Advisory Council. I also work with many different working groups with the Rare Disease Diversity Coalition and I am an active member of the Patients Rising Senate.