This Sarcoidosis Awareness Month ‘Stand Up for Sarc’

The Foundation for Sarcoidosis Research is presenting a number of efforts, programs in April

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by Mary Chapman |

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The Foundation for Sarcoidosis Research (FSR) is offering ways to participate in National Sarcoidosis Awareness Month, observed each April, to call attention to sarcoidosis and the 175,000 U.S. residents thought to be living with the disease.

Despite advances in research, sarcoidosis remains challenging to diagnose and treatment options are limited to managing its symptoms. The immune system disorder is marked by chronic inflammation that results in small clumps of immune cells, called granulomas, forming in some tissues and organs.

While the disease can affect any area of the body, it’s most common in the lungs and lymph nodes, where it causes chronic coughing and shortness of breath. The skin, liver, and eyes, can also be affected.

The nonprofit FSR is presenting a national campaign called Stand Up For Sarc to help raise sarcoidosis awareness in April.

“Sarcoidosis has a significant impact on the lives of all it touches,” Mary McGowan, FSR’s CEO, said in a foundation press release. “We are asking patients, caregivers, clinicians, and the whole community to “Stand up for Sarc” and to join us by helping to raise awareness, advance research, and improve the lives of all impacted by sarcoidosis. Standing up together we can spark progress and hope!”

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As part of the campaign, “super-hero” participants are encouraged to post photos of themselves on social media dressed in purple — the color that represents the disease — or hold signs expressing their support. They are asked to tag @stopsarcoidosis and use the hashtag #StandUpForSarc!

Those living with the disorder are asked to share their personal stories on social media to help people understand the sarcoidosis journey, which varies among patients. A toolkit is available with suggested posts, hashtags, and other social media and fundraising tips, including for April 13, World Sarcoidosis Day.

Throughout the month, the FSR will host a virtual awareness and fundraising challenge called Steps for Sarc. Supporters are asked to raise money for research and patient support by completing a “step” challenge, informing legislators of community needs, or sharing their stories. The fundraising goal is $75,000.

The organization is also presenting an array of educational, wellness, and social engagement programs in April, including a town hall, a story-sharing event, and the weeklong “Ask the Sarcoidosis Experts” program. Through these events, participants have opportunities to connect with community members, learn from sarcoidosis experts, and engage with the foundation.

The FSR is also calling attention to tools and resources, including its on-demand educational offerings, patient registry, clinical trial locator, roadmap for new patients, and the national campaign “Ignore No More: African American Women and Sarcoidosis.” Also available are the latest sarcoidosis diagnosis and treatment guidelines.

In addition to the general public, the campaign targets lawmakers, researchers, health professionals, and industry representatives.