Advocate

Although patients and their families recognize sarcoidosis to be a devastating illness, more volunteers are needed who will join us to advocate for awareness. There is much work to be done to determine the cause, exact prevalence, and best treatment protocol for sarcoidosis – it is unacceptable that many patients have to suffer for years before receiving the correct diagnosis or proper treatment.

You can help! Our proclamation toolkit makes being an advocate for more awareness among local and state officials easy! In many states, securing a proclamation is as easy as a Google search and a form submission.

The states depicted in purple below are states in which proclamations recognizing April as Sarcoidosis Awareness Month have been secured for 2017. Those depicted in red reflect states to which requests have been submitted:

If your state is depicted in purple, reach out to your state representatives to thank them for recognizing this devastating disease! Don’t forget to make it personal, sharing a little bit of your story and what their support means to you!

If your state is depicted in red, contact your state representatives to request an update on the proclamation request submitted by our community which will recognize April as Sarcoidosis Awareness Month. Please note that California and Maine will only draft letters of support – please encourage them to do so and we’ll paint the state purple on the map. We are trying to turn the entire map purple by April 30, 2017!

Sample Proclamation Language

Whereas, sarcoidosis is a potentially debilitating and deadly multi-organ, inflammatory disease, estimated to affecting 200,000 people in the United States;

Whereas, the signs and symptoms of sarcoidosis vary widely depending on the person and organs affected and can include debilitating fatigue; shortness of breath; difficulties with balance and coordination; irregular heartbeat; visual problems, including blindness; pain affecting joints and muscles; weakness or numbness of limbs; skin rash and discoloration; mood disorders such as depression and anxiety; organ failure; and sleep difficulties;

Whereas, Sarcoidosis can affect people of any age, race, or gender, but is most common among adults between the ages of 20 and 40 and 3.8-fold higher in African Americans than in whites;

Whereas, research suggests the cause of sarcoidosis is a combination of genetic and environmental factors, but the exact cause and progression of the disease is still unknown;

Whereas, sarcoidosis is a diagnosis of exclusion as there is no objective test, biomarker, known case, or cure;

Whereas, volunteers, researchers, caregivers, and medical professionals are working to improve the quality of life and prognosis of persons living with sarcoidosis and their families;

Now, therefore, I, _____________________________, do hereby proclaim April as Sarcoidosis Awareness Month. In Witness Whereof, I have hereunto set my hand and caused the Great Seal of _________________ to be affixed. Done at _________________ in the _________________________________ this _____ day of ________________ in the Year of Our Lord two thousand ________.

Learn other ways in which you can raise awareness.