FSR launches ‘Facing Sarcoidosis Together’ this awareness month
Campaign recognizes ways community, support, advocacy can help patients
April is Sarcoidosis Awareness Month, and this year’s theme, as chosen by the Foundation for Sarcoidosis Research (FSR), is “Facing Sarcoidosis Together” — which seeks to recognize the unique ways in which community, support, and advocacy can help patients navigate their disease.
“Living with sarcoidosis presents significant challenges, but no one should have to face them alone,” the foundation states on its campaign webpage. “Whether you are a patient, caregiver, advocate, or medical professional, we stand stronger when we unite to raise awareness, amplify voices, and push for better treatments.”
According to the FSR, about 1.2 million people worldwide have been diagnosed with sarcoidosis, a disease marked by the formation of clusters of inflammatory cells, called granulomas, in the body. These granulomas interfere with the function of organs and tissues, causing symptoms that can affect the lungs, eyes, heart, and skin.
Despite advances in research, the disease remains difficult to treat, and patients continue to voice the need for new treatment options that help them overcome daily challenges and live better lives.
Over the past 25 years, the U.S.-based nonprofit has worked to advance research while also connecting, informing, and empowering patients.
“This April in particular is really special for FSR because we are celebrating our twenty-fifth anniversary this year,” Cathi Davis, FSR’s director of communication and marketing, said in an FSR Sarc Fighter Podcast episode focused on Sarcoidosis Awareness Month, which aired March 31.
“The power of community has been at the heart of everything that we do,” Davis said. “It can be a really challenging disease to live with and to find a diagnosis for, and no one should have to face that alone, which is why we really want to highlight the power of community … [through] this theme of togetherness.”
Virtual, in-person events on tap for awareness month this April
Everyone is invited to join the community and share a story or a photo featuring something purple — the internationally recognized color for sarcoidosis. The goal is to help spread the word and raise awareness. The campaign is using the hashtags #PostInPurple, #SarcoidosisAwareness, and #FacingSarcoidosisTogether on social media.
As part of the campaign, the FSR will also be hosting a monthlong virtual fundraising challenge to raise $75,000 in support of accelerating research and patient programming. Those who donate $25 or more will receive a purple anniversary bracelet.
If there’s a way to prevent [this disease] for others… that’s really where I feel like my mom would want me focused.
This year, advocate Molly Flick, whose mother died of pulmonary sarcoidosis, is offering a $25,000 match for all donations to FSR during the month.
“If there’s a way to prevent [this disease] for others… that’s really where I feel like my mom would want me focused,” Flick said in an FSR press release.
Another way to support the FSR’s research and patient support initiatives is to buy the campaign’s purple T-shirt through April 21.
To encourage people to stay engaged with the campaign during the month, the foundation is also hosting a number of other virtual and in-person awareness-raising activities. Supporters can join webinars, take part in live question-and-answer sessions to connect with others, both patients and advocates, and take part in indoor or outdoor walks.
Events will start the week after World Sarcoidosis Day, which is celebrated on April 13.
Virtual offerings include:
- a LinkedIn Live for Sarcoidosis Awareness event the week of April 14
- a webinar on ocular sarcoidosis and treatment beyond the corticosteroid prednisone, slated for April 16
- an Ask the Sarcoidosis Expert forum between April 21-24
- a physical therapy Q&A session on April 22
- a Memorial Monday, to honor those who have died from sarcoidosis complications, on April 26.
Among in-person events will be:
- a Sarcoidosis Awareness Walk on the Mall in Washington, D.C., on April 26
- a bowling event in Independence, Ohio, also on April 26
- a Sarcoidosis Awareness Walk hosted by FSR Global Sarcoidosis Clinic Alliance member Temple University, in Philadelphia on April 27
- a Sarcoidosis Meet Up at Virginia Commonwealth University, in Richmond, on April 27.
“Over these past 25 years, we’ve worked really hard at making strides and accelerating research and fostering patient empowerment,” Davis said. “None of this would be possible, at all, without the support of our whole community — of all the patients and clinicians and researchers and partners who have helped come together and join forces.”
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