Every year since 2016 FSR has assembled a group of highly dedicated patients to serve as FSR Patient Ambassadors. This group of patients serve as local resources for sarcoidosis patients, advocate for awareness in their communities and to their state legislators, and help FSR across all of research and education programs.
This year we have a dynamic team of 95 Ambassadors that are located in 49 of 50 states in the U.S.! In February we had the pleasure of bringing the ambassadors together for training in Washington D.C. This training helps both new and old ambassadors learn about FSR’s programs and mission, set their goals, collaborate with their fellow ambassadors, and develop the skills needed to succeed in their role as a sarcoidosis advocate. This training also helps FSR identify the skills of each patient ambassador; some are strong public speakers, some excel at event planning, and some have experience and relationships with their local legislators. Knowing what each ambassador is great at helps us figure out what their role will be for the year.
Patient Ambassadors are also great resources for other patients. They can provide you with doctor recommendations in your area, provide emotional support, or help you with many other things. Click the button below to find your local ambassador!
Getting to Know Our Ambassadors
Each of our patient ambassadors has a unique story and history. These backgrounds make it possible for many patients to find an ambassador who has experienced something similar to themselves. To help you get to know all of our ambassador better, we asked them all to write a short biography. Below are the bios of four of our new 2019 ambassadors. To find your local ambassador, click here!
I was diagnosed with neurosarcoidosis in 2013. I was first introduced to it by waking up with double vision and over the course of the past 6 years I have experienced every cranial palsy from sudden sensory hearing loss to temporary loss of speech, swallow, photophobia, severe headaches, vestibular issues, abnormal eye movements. Sarcoid was initially found in my lung. My friends and family mean the world to me and they keep me going. I’m really limited right now due to my symptoms but I try to enjoy short periods of time with my friends and family. I also enjoy spending my time with my 4-year-old Labradoodle Mia, listening to audible, & watching Netflix. When I feel better, I enjoy walking, socializing and being outside in nature especially by the ocean.Allison Brigham
In September of 2014 I was diagnosed with neurosarcoidosis with cardiac and pulmonary as secondary issues. During my 40-year career as a police officer it was important to me be involved in my community on different levels. I have been an assistant track coach on the high school level, involved in various law enforcement associations on the state, and regional levels. I eventually left the force on disability as a result of my sarcoidosis and remain there today. Presently I serve on the local YMCA board of directors. In my free time I enjoy exercise like walking, hiking, and running. I also enjoy RVing and fly fishing.Paul Paradis
In 1998 I began having a strange series of symptoms. It began with a serious full body psoriasis outbreak. This outbreak defied medical intervention but eventually gave way to a sporadic, limited outbreak that responded well to medication. Though unpleasant, this situation just became my new normal. After several years, on September 1, 2005 I was given a preliminary diagnosis of lymphoma. I struggled with my providers and insurers to get to the bottom of what was happening to me and on October 16th 2006(over a year later), after an open laparotomy, I was finally given a diagnosis of sarcoidosis. The meaning to my life now is listening to my children, my grandchildren who will sit and play with me, knowing my limitations and accepting them.Lorie Carter
I was diagnosed a little over 6 years ago with systemic sarcoidosis after spending some time in the hospital. I had an enlarged spleen and many electrolyte imbalances. My mother was diagnosed 10 years prior with pulmonary sarcoidosis. Just recently I was diagnosed with pancreatic sarcoidosis. I am a single mother to a 9-year-old boy. He is very active in sports and is way smarter than I could have ever hoped for! We share a love for rescue dogs and have recently adopted our 2nd rescue. I have been a member of Larimore Volunteer Ambulance Service for 18 years. I am now a staffed AEMT and the Office Manager.Brandi Cleaver