Share Stories, Take Fundraising Steps for Sarcoidosis Awareness Month

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by Shayna Korol |

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Sarcoidosis patients are invited to share their stories, fundraise, and attend a variety of events this April to celebrate Sarcoidosis Awareness Month.

An estimated 1.2 million people across the globe live with sarcoidosis, an inflammatory disease with no known cure. Nearly 175,000 of these people are thought to live in the U.S.

The Foundation for Sarcoidosis Research (FSR), an international organization devoted to finding a cure for sarcoidosis and supporting patients through research and outreach, is spearheading a variety of awareness efforts this month.

FSR’s #MakeItVisible campaign aims to raise awareness of the disease. Members of the sarcoidosis community are invited to post a black-and-white photo of themselves on their social media accounts, along with a 10-word description of why raising awareness matters and what they want people to know about sarcoidosis. To participate, tag @stopsarcoidosis and use the hashtag #MakeItVisible.

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As part of its #MakeItVisible campaign, FSR partnered with Jeremy Levy, a voice actor best known for his work as BumbleBee in the “Transformer” cartoons whose mother has sarcoidosis.

FSR offers a social media toolkit for sarcoidosis patients and supporters to use throughout April. The organization also provides a Sarcoidosis Awareness Proclamation Toolkit to advocate for U.S. state and city proclamations recognizing Sarcoidosis Awareness Month.

FSR’s Steps for Sarc fundraising challenge webpage invites all community members to “walk, run, step, or hike all month long so that we can reach 61,250,000 steps collectively as a community or complete the equivalent of 21,500 miles!” Individual participants are encouraged to take 175,000 steps — around 5,833 steps a day — throughout this month to represent the estimated 175,000 sarcoidosis patients in the U.S. The foundation set a $61,250 fundraising goal to accelerate sarcoidosis research, and strengthen its education and support services.

To build on the #MakeItVisible campaign, Steps for Sarc participants are encouraged to use a black-and-white photo for their profile picture. Here is more information on how to build a team for Steps for Sarc, and here you can find information on how to raise awareness on social media.

April 13 marks World Sarcoidosis Day each year. To celebrate the occasion, FSR is hosting a World Sarc Day trivia event. FSR is also offering a variety of educational webinars throughout the month, including an April 12 webinar on sarcoidosis of the spine and an April 28 event on coping with grief through art.

SarcoidosisUK, a British charity that provides resources and funds research into a cure, offers a variety of ways to get involved this Sarcoidosis Awareness Month. The 2022 Warrior Walk challenges participants to take 10,000 steps every day in April. Walkers will receive support from the SarcoidosisUK team and a fundraising guide when they sign up, as well as a free Sarcoidosis Awareness Month T-shirt when they raise their first £50 (about $65).

For those who want to support SarcoidosisUK but do not want to take on the Warrior Walk challenge, the Build Your Own Marathon event allows supporters to go on a “marathon” in whatever form they like. SarcoidosisUK suggests a sponsored day of silence or setting a milestone to reach with a personal hobby.

SarcoidosisUK is also creating an Awareness Month playlist dedicated to everyone impacted by sarcoidosis. The charity aims to make a unique playlist that can be shared among the sarcoidosis community while raising funds. To add a song to the playlist, you can make a donation here.

On April 28, SarcoidosisUK and The Royal Brompton & Harefield Hospitals in London will host a virtual Sarcoidosis Patient Day. The free event will build on the success of 2021’s Patient Day and feature a variety of speakers with seven different sessions throughout the day.

The Bernie Mac Foundation raises funds to support sarcoidosis research and offers resources to patients, focusing on families in low- to moderate-income communities. It is hosting the 5th Annual Purple Carpet Awards Fundraising Event on April 27 at the Wintrust Financial Building in Chicago.

This awards event celebrates champions within the sarcoidosis community. Tickets for this fundraiser are $175; click here for more information and to purchase tickets.