Event Information

6th Annual Sarcoidosis of Long Island Awareness Walk
Raising Awareness for Sarcoidosis


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6th ANNUAL SARCOIDOSIS OF LONG ISLAND AWARENESS WALK

To Raise Awareness for Sarcoidosis during Sarcoidosis Awareness Month

 

This is our 6th Annual Sarcoidosis of Long Island Awareness Walk for April Sarcoidosis Awareness Month. The Town of Brookhaven, Sarcoidosis of Long Island, Stony Brook University and American Lung Association are sponsoring a one and three mile walk to support Sarcoidosis research. We will have vendors as well as a raffle of great prizes! This is more than a walk; it is an event! We will also have a local radio station in attendance.

Event Location- Stony Brook University- Student Activities Center

100 Nicolls Rd, Stony Brook, NY 11790

Date of Event- April 18, 2020

Registration is $25.00 until day of event. $30.00 Day of event.

Pre-Register at website

Website- ticketor.com/sarcoidosisofli

Time of event- 9:00am- 1pm

At 9am- Registration

At 10:00am- Town Council Member Valerie Cartwright and Jane Bonner and Suffolk County Legislator Sarah Anker will be cutting the ribbon. Plus more esteemed government officials will be attending.

 10am-12:00pm- School of Rock will be Performing

School of Rock Port Jefferson House Band playing during the event!

We will have Bagels and Water, Raffles and Vendors!

And So Much More To Come!!!

What is Sarcoidosis? Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose, with limited treatment options and no known cure.

Disease presentation and severity varies widely among patients. In some cases, the disease goes away on its own. In others, the disease may not progress clinically, but individuals will still suffer from some symptoms that challenge their quality of life. The rest of patients—up to a third of people diagnosed with the disease—will require long-term treatment. Sarcoidosis is considered chronic in people whose disease remains active for more than 2-5 years; in this population sarcoidosis can be debilitating and life-threatening.

Many 9/11 First Responders and Survivors have been diagnosed with Sarcoidosis due to the chemicals as well as the heavy dust.

It is estimated that over 200,000 people in the United States have Sarcoidosis. There is no known cause or cure for this disease, and it is one of the least government funded rare diseases in the United States.

Sarcoidosis of Long Island is a charitable organization created to provide emotional and doctor assistance to individuals living with Sarcoidosis as well as partnering with other organizations to help find a cure.

 

Sarcoidosis of Long Island, established in September 2012, is a nonprofit organization that raises awareness for a Rare Disease called Sarcoidosis. It has had three 5k races as well has been to Washington DC to advocate to the United States Government for Sarcoidosis Awareness and Research. We have received resolutions from Brookhaven Town, Suffolk County, and New York State for April to be recognized as Sarcoidosis Awareness Month. We are in the process of proposing a Federal resolution making April Sarcoidosis Awareness Month. For more information please check out www.sarcoidosisofli.org or call us at 631-432-9374





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