Patient Navigator Program
The Foundation for Sarcoidosis’ Patient Navigator Program provides 4 weeks of one-on-one support for those newly diagnosed with sarcoidosis, or patients experiencing a new organ manifestation of the disease. Caregivers of newly diagnosed sarcoidosis patients or patients experiencing a new organ manifestation of the disease are also eligible to apply. FSR’s Patient Navigators are experienced sarcoidosis patients and care partners who have passed our Navigator training program and are specially trained to provide peer-to-peer support.
Types of support our Patient Navigators can provide:
- Finding sarcoidosis resources in your community and/or nationwide (support groups, local sarcoidosis awareness efforts, etc.)
- Providing support for how to communicate with your healthcare provider
- Providing support for how to communicate with family and friends
- Lending an ear - sometimes, you just need someone to talk to who “gets it”
- Providing support as you work to thrive with your new diagnosis/manifestation
- Connecting you to information about clinical trials and research
Types of support our Patient Navigators cannot provide:
- Finding a healthcare provider (please check out our Provider Directory here or reach out to info@stopsarcoidosis.org for guidance )
- Counseling or psychotherapy - While our Patient Navigators have been specially trained to provide peer-to-peer support; they are not professional mental health counselors or therapists.
- Medical advice - our Patient Navigators are not a substitute for healthcare providers. While some of our Patient Navigators have professional healthcare training, they cannot provide any medical advice. The standing advice of FSR and all our Patient Navigators is to always speak with your physician regarding healthcare questions, or contact 911 in case of an emergency.
How it works:
- Complete a request for Patient Navigator here.
- FSR will email you when you have been matched with a Patient Navigator
- After you have been matched, your Patient Navigator will contact you via your preferred time and method
- Your Patient Navigator will call you every week for 4 weeks to provide support.
FAQ
Meet the FSR Patient Navigators
Anne
Location: West Coast
Three words to describe her: Optimistic. Resilient. Enthusiastic
Anne lives in Southern California with her husband, Andy. An avid traveler, golfer, gardener, and Management Consultant, Anne began a new live chapter when diagnosed with neurosarcoidosis two years ago. Finding the right clinical team has enabled Anne to enjoy her favorite parts of life: coffee with friends, long walks with the dog on the beach, and traveling to new destinations.
Brenda
Location: Midwest
Three words to describe her: Funny. Kind. Motivated.
Brenda is from Evanston, IL. She was diagnosed with pulmonary sarcoidosis in April 1989 and has had many health challenges with this disease. She has enjoyed volunteering with the Foundation for Sarcoidosis Research since 2002 on the Patient Advisory Council, as a Patient Ambassador, and as a Patient Advocate and Navigator. She has established and facilitated sarcoidosis support groups since 1991.
Chasta
Location: South
Three words to describe her: Unique. Charismatic. Energetic.
Chasta says she can be a very complex individual. She loves to read, eat, and dream. Chasta has been a volunteer and Patient Advocate since 2015, and truly enjoys helping people.
Della
Location: Southwest
Three words to describe her: Happy. Smart. Thoughtful.
Della Washington holds a bachelor's in criminal justice and a master's in criminal justice/ legal studies focused on government. Della has neurosarcoidosis. Her on main interest in her work with FSR is to speak with government officials so they can develop an understanding about sarcoidosis and what patients need from pharmaceuticals and insurance companies so that they can live their lives a little bit better each day.
Regina
Location: Midwest
Three words to describe her: Tenacity. Strength. Funny.
Regina Gordon was born and raised in Fort Wayne, Indiana. She has lived with sarcoidosis since 1994. In her spare time, Regina is very active in her community as well as facilitating several sarcoidosis support groups. She is a graduate of Indiana University and is seeking her second master’s degree in Communications at Purdue University. Her family has been her pillar of strength and support.
Robert
Location: East Coast
Three words to describe him: Family-friendly. Supportive. Proactive.
Robert is a retired vocational counselor and strongly believes in the right to confidentiality. He coughed chronically for two-years when misdiagnosed with “exertional asthma”. He thought he was having a heart attack one day, which lead to the correct diagnosis of respiratory sarcoidosis. Robert took Prednisone and codeine cough syrup for 5 years and has been fighting the long-term side effects of Prednisone for 20 years. Robert loves his wife, dog, fishing and pick-up truck. He enjoys target shooting, growing tomatoes and blueberries, collecting Israeli stamps, and participating as a booster for high school reunions.
Sabrina
Location: South
Three words to describe her: Funny. Kindhearted. Happy.
Sabrina was diagnosed with sarcoidosis of the skin in June 2011. In April of 2012, she became the founder of Southwest Louisiana Sarcoidosis Support Group, which has been going strong ever since. 2020 would have been her 4th Annual Sarcoidosis Awareness 5K, and she’s been a Patient Advocate with the Foundation for Sarcoidosis Research since March 2016. A fun fact about Sabrina is she was a Big Sister in the program Big Brothers Big Sisters and has had the same Little for 13 years. She describes it as a wonderful experience.
Sammy
Location: East Coast
Three words to describe him: Integrity. Knowledgeable. Understanding.
Sammy is a physician assistant with 33 years of experience in emergency medicine and cardiology. His has a MS degree in Health Services Management and Policy Analysis. Sammy is the founder of the Health Safe Neighborhood Project, which is designed to provide rapid CPR/AED response. He enjoys public speaking, and in his younger years was a radio personality, spinning tunes during the 70’s and 80’s. Sammy believes if there is anything good about having sarcoidosis, it is that it has made him a better health care professional.
Cheryl
Location: Northeast
Cheryl was diagnosed with pulmonary sarcoidosis in 2001; September will mark five years since her disability retirement from the NYC Department of Education. She holds a degree in business administration. Cheryl is a Patient Ambassador for interstitial lung disease (ILD) at Snow Companies/ Boehringer Ingelheim (BI), where she shares her authentic story with other patients, caregivers and medical professionals to raise awareness and inspire change. Cheryl’s story has been published in the American Thoracic Society (ATS) Patient Voices in November 2020. Cheryl was featured in a documentary on the A&E network called Beyond Breathless, which ran in 2020/2021. She also appeared in the LifeTime network program “Balancing Act: “Behind the Mystery” in December 2021. Cheryl is feature in “Tune In To Lung Health” a resource to help motivate, inspire, and support people in their journeys
with ILD.