Category: Patient Voices

Patient Ambassador Advocates for In-District Lobby Days

Patient Ambassador Advocates for In-District Lobby Days

During the month of August, while congress members were back in their local districts, Rare Disease Legislative Advocates organized their annual “In-District Lobby Days,” helping rare disease patients connect with their local representatives to meet and...
Rough Roads: Cycling with Sarcoidosis

Rough Roads: Cycling with Sarcoidosis

John Carlin is an award-winning news anchor currently working at WSLS 10 in Roanoake, Virginia. He’s also an avid cyclist, a strong pillar of his local community, a loving husband and father, and a sarcoidosis warrior. Several years back, John began...

The Long Road to Diagnosis

Allison Hawley- like so many other sarcoidosis patients- has had a tough time getting a diagnosis. Her journey has been filled with misdiagnoses, complicated tests and procedures, and doctors scratching their heads. Allison attended the FSR Patient Conference in...
A First Responder’s Story

A First Responder’s Story

Firefighters and first responders seem to be at a higher risk of developing sarcoidosis. While this has been a theory by many over the years, like every other aspect of sarcoidosis, research was lacking. As a disease that commonly affects the lungs and shows a...
FSR Ambassador at Senate Press Conference

FSR Ambassador at Senate Press Conference

U.S. Senate Democratic Leader Charles E. Schumer, with Kerry in the background Senator Debbie Stabenow (MI) FSR Patient Ambassador Kerry was in Washington, D.C. last month attending a press conference held by Senate Democrats. The press conference focused on pending...
Couple’s 5K Grabs Local Media Attention

Couple’s 5K Grabs Local Media Attention

Perry and Melissa Enyedi are an Ontario couple hosting an independent K.I.S.S. walk in Brantford, ON this Saturday. While sarcoidosis is a rare disease, their family has had more than their fair share of experience with the disease- both Perry and Melissa’s...
We’re Painting the Map Purple!

We’re Painting the Map Purple!

This mission to find a cure is so much bigger than one individual but in the end all it takes is one action by one person at one time to change everything. Deborah, middle, surrounded by her supportive loved ones. FSR’s Patient Ambassador Deborah Rice has gone above...
Step by Step: A Patient’s Story

Step by Step: A Patient’s Story

The first Wednesday in April is National Walking Day! Bob Owens used to be a first responder, where being in good physical shape is just part of the job. When he stopped working, Bob found it was exceedingly difficult to stay in shape. His weak lungs and chronic...