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Patient Navigator Program 

The Foundation for Sarcoidosis’ Patient Navigator Program provides one-on-one support for those newly diagnosed with sarcoidosis, in the diagnosis process, experiencing their first flare, and/or new organ manifestation. FSR’s Patient Navigators are experienced sarcoidosis warriors and caregivers who have passed our Navigator training program.

Types of support our Patient Navigators can provide:

  • Finding a knowledgeable healthcare provider
  • Finding sarcoidosis resources in your community and/or nationwide (support groups, local sarcoidosis awareness efforts, health teams, etc.)
  • Talking through complex health decisions, and or disability processes
  • Providing support for how to communicate with your healthcare provider
  • Lending an ear: sometimes, you just need someone to talk to
  • Being present as you move through your sarcoidosis journey

How it works:

  • Complete a request for Patient Navigator here. 
  • FSR will match you with a Patient Navigator within 24 hours of receiving your request
  • Your matched Patient Navigator will contact you via your preferred time and method within 24 hours of being matched
  • Your Patient Navigator will do an initial check-in with you, and the two of you will determine how to utilize the next 45-days.
  • FSR will reach out to you at various time points both inside the 45-days and up to six months after to ensure everything is going and went smoothly.

What this program is not:

  • A counseling or therapy service: our Patient Navigators have been specially trained in peer support. But they are not counselors or therapists
  • A substitute for healthcare providers: our Patient Navigators come from a variety of backgrounds. However, even those with medical licenses will not provide 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.

FAQ

Meet the FSR Patient Navigators

anne roeser

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 harris

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

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 washington

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. 

Diane

Diane

Location: Southwest 

Three Words to describe her: Compassionate. Resilient. Social. 

Diane was born and raised in Upstate NY, and resides in Phoenix, AZ. She is married with three daughters and one stepson. Diane and her husband recently celebrated the 22nd anniversary of their first date. Diane has been in the employee benefits field for over 30 years. Diane was diagnosed with sarcoidosis 12 years ago, yet had no symptoms until four years ago. She has worked with FSR as a Patient Advocate for the past two years. 

Jim K

Jim

Location: Midwest 

Three words to describe him: Not. Done. Yet. 

Jim is a rare disease warrior, diagnosed in 2014 with sarcoidosis that initially started in his lungs/lymph nodes before quickly spreading to his eyes and skin. Most recently he was also diagnosed with neurosarcoidosis. Jim is passionate about helping other sarcoidosis sufferers. Jim and his wife of 32 years refuse to let his disability ruin their enjoyment of life. Jim enjoys spending short periods of time gardening, and is an accomplished cook – winning multiple awards in national chili cook-offs. 

Rebecca Stanfel

Rebecca

Location: West Coast

Three words to describe her: Committed. Thoughtful. Fierce. 

Rebecca is a writer who lives in Helena, MT. She was diagnosed with sarcoidosis in 2004. Since then, her writing has focused on living with this disease. Her work has appeared in national publications. She’s been a Patient Advocate with FSR since 2019. Rebecca lives with her husband, Jay, and their 17-year-old son, Andrew. They love traveling together. When she’s feeling healthy, you can find her hiking, cross-country skiing, or ice skating in Montana’s beautiful landscapes. 

Regina G

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

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

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 suriani

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. 

susie dagostino

Susan

Location: Southeast 

Three words to describe her: Compassionate. Intelligent. Good listener. 

Susan is a certified mindfulness meditation instructor through the McLean Meditation Institute. Susan is a sarcoidosis warrior and has had a life-long interest in the mind-body connection, specifically as to how the mind affects the body in prevention of disease and in its recovery from illness. She is a retired registered nurse and has worked in the health care setting in various roles for over 40 years. 

bill urban

William “Bill”

Location: Midwest 

Three words to describe him: Forthright. Caring. Problem solver. 

Bill Urban was diagnosed with cardiac and pulmonary sarcoidosis in 2014.  This unexpected life altering event made him want to prevent sarcoidosis from impacting others and their loved ones.  Having overcome early setbacks with sarcoidosis, he helps others regain a sense of normalcy in everyday life. These beliefs have led Bill to FSR and the Navigator Program. Bill is from the Cleveland area, and is very grateful to the Cleveland Clinic Foundation for the outstanding care he has received.  Bill and his wife Carolyn are proud parents of three adult children and have two grandchildren.

cheryl

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.

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