Foundation for Sarcoidosis Research Launches Patient Ambassador Program

Foundation for Sarcoidosis Research Launches Patient Ambassador Program

The Foundation for Sarcoidosis Research recently launched a Patient Ambassador Program called “Ask the Ambassadors!” to help people with sarcoidosis clarify questions they may have about life with the condition, treatment options, and other topics.

The foundation believes that the causes of sarcoidosis, and ultimately a cure, will be revealed through rigorous and comprehensive scientific research, fueled partially by patient engagement.

The program puts that belief into action by selecting patient ambassadors nationwide to work closely with the foundation in empowering patients, as well as advocating on the local and national levels by supporting programs and fundraisers.

Patient ambassadors will also help gather and analyze feedback to make specific recommendations on how to strengthen the effectiveness of other programs sponsored by the foundation.

“Ask the Ambassadors!” is a virtual Q&A that allows everyone to submit questions online through the foundation’s website here, no matter if they’re a newly diagnosed patient or someone who’s had the disease for years. Caretakers can also submit questions, as well as medical professionals.

The program aims to answer specific questions that only people who have lived through the same experiences with the disease can relate to.

Some of the subjects patients have asked about include:

  • How do I talk about sarcoidosis with my loved ones?
  • How do I get my doctor to explore more treatment options than just steroids?
  • What are some tips for getting through bad brain fog days?

Some questions will be selected and then answered per post, depending on the number of questions submitted. Be aware that your questions may not be answered right away; there may be an ambassador who is particularly knowledgeable about your subject, and that person may no be available right away.

One note: Ambassadors cannot answer any medical questions about sarcoidosis because they are not trained physicians.

The online form accepts only three questions, but if participants have more than three questions, these can be submitted a second form.

So far, the Patient Ambassador Program has 73 volunteers (all patients and loved ones), all of whom have been formally trained by the foundation about sarcoidosis, patient advocacy, research, and other issues related to the disease.

Ambassadors represent the foundation in 43 U.S. states, with their numbers growing every year.

2 comments

  1. Nachum says:

    hi

    think FSR should try and do this globaly,
    im from Israel, and as a small country there is no sarco
    foundation here

  2. My first experience with sarcoidosis was 21 years ago. I felt like I had the worst flu imaginable and was in bed for two months and lost 35 pounds. My PCP finally figured out what I might have and ordered a lung biopsy and put me on 80 mg of prednisone after discovering sarcoid throughout my lungs. I did recover and it went into remission for a long time. I have had flares that I know were sarcoid and I recovered within a few weeks. My symptoms are uncomfortable but not as bad as others and I feel fortunate about that.
    My questions have to do with my childhood. I was raised on a cattle and wheat ranch near Walla Walla, Washington, 40 miles from Hanford during the 1940 until the 1960s. I am one of the Downwinders and am wondering if this might have something to do with my sarcoidosis. We also used massive amounts of DDT on the farm and the crops were crop dusted every year with DDT and who know what other poison was mixed in the DDT. We actually stood out watching the plane and getting soaked with the chemicals–my uncle said it was safe because the government said it was, so it fell down on us like rain.

    I lived in Pendleton, Oregon, until the 1960s and then moved to Pasco, Washington, where I lived during the Hanford leaks. We swam almost daily in the Columbia River where seepage from the plant occurred.

    My thyroid was removed 10 years ago because of several nodules on it and the huge size–over 6 mm. My heath over the years hasn’t been that bad and I have never had cancer–However, always felt tired and had constant headaches. My general surgeon told me I should look into the Downwinder information because he felt that I had definitely been exposed to the Hanford leaks.
    I would so appreciate any information you could give me. I am 76 and just had a flare of the disease and that has started me wondering if there is a connection between my early life in Eastern Oregon and Southern Washington and the onset of sarcoidosis.
    Thank you,
    Patricia A Scrabeck
    300 Luman Road, #158
    Phoenix, Or 97535

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