Sarcoidosis Awareness Month at the Jersey Shore

April is Sarcoidosis Awareness Month..and if you're anything like me..you're thinking what is that?  How can I learn more..or better yet how can I get involved.  I went right to a friend of the show who will explain it to us.

Wear your purple for Sarcoidosis Awareness Month!

This is a letter from Cathy Wick, from the Jersey Shore, who battles Sarcoidosis everyday, a huge advocate for this disease where there is no cure.  Cathy is a Patient Ambassador with the Foundation for Sarcoidosis Research.

I was diagnosed with sarcoidosis in 2001 however the disease was dormant inside of me and I was, for the most part, asymptomatic for the next 10 years.  It wasn’t until Jan 2011 when I finally became sick from sarcoidosis.  I am unable to work and now have trouble doing simple things such as walking short distances, carrying laundry upstairs, and going to the grocery store.

Sarcoidosis (pronounced SAR-COY-DOE-SIS) is a rare inflammatory disease that can affect almost any organ in the body.  It causes heightened immunity, which means that a person’s immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body’s own tissue.  The classic feature of sarcoidosis is the formation of granulomas, which are microscopic clumps of inflammatory cells that group together and look like granules, then the name.  When too many of these clumps form in an organ, they can interfere with how that organ functions.  The cause of sarcoidosis is unknown and there is not cure.

Since I became ill, I have been doing anything I can think of to raise awareness and money for research for this disease. I have done beach clean-ups with friends where we all wear the same t-shirts, I have had a float in the Belmar/Lake Como St Patrick’s Day Parade for the past two years, I have been out on the plaza of the TODAY Show with signs and banners for the past three years, and many other things to raise awareness.   I have partnered with the Foundation for Sarcoidosis Research (FSR) and I host a fundraiser every October to raise money for FSR.  To date I have raised over $40,000 for sarcoidosis research.  I have also attended Rare Disease Week on Capitol Hill in Washington DC for the past two years as a patient and a patient advocate of FSR.  Just recently FSR has given me the title of patient ambassador and placed me in charge of New Jersey, Maryland, and Rhode Island.  Some of my responsibilities as a patient ambassador include maintaining contact with regional support groups, physicians, and online support communities, and sharing FSR information and events with my local community as well as getting feedback and concerns from other patients and sharing them with FSR staff.

I have also received a proclamation in April 2015 from then Mayor George Dempsey acknowledging April as Sarcoidosis Awareness Month in the Borough of Manasquan and in October 2015 I received a Joint Legislation Resolution from Assemblyman Dave Rible, Assemblyman Sean Kean, and Senator Robert Singer acknowledging April as Sarcoidosis Awareness Month in the State of New Jersey.

Upcoming Sarcoidosis Events:  See how you can help out.

On Monday, April 18^th at 7 pm at the Manasquan Borough Hall, Mayor Edward Donovan will be presenting me with a proclamation acknowledging April as Sarcoidosis Awareness Month.  Assemblyman Dave Rible will be in attendance as well as someone from The Coast Star.  Anyone who would like to show their support is invited to come to the meeting, all I ask is that you please wear purple.

On Saturday, April 30^th, FSR is hosting a 5K walk/run fundraiser in Chicago.  I will not be able to attend the event in Chicago so I am registered as a virtual walker and I will walk the boardwalk here in Manasquan.  Anyone interested in joining me can register as a virtual walker at https://www.stopsarcoidosis.org/news/kiss5k-runwalk/ .  Once you are registered, please join my team “Cathys Cause”.  The cost is $25 to register and we will meet at the Inlet Beach in Manasquan at 9 am on April 30^th.  Optional - Clean Ocean Action is hosting their Spring Beach Sweep that same morning so after the walk we will volunteer to clean the beach!!  J

JUST FOR FUN!  I am hosting a contest on Facebook to help raise awareness.  Participate in the #purplechallenge by taking a selfie wearing something purple and tag me “Cathy Wick” along with the #purplechallenge as much as you want during the month of April.  Each time you do, I put your name in a bag and at the end of the month I randomly pull three names and award those three people prizes!!

Saturday, September 17^th we’re doing the Insane 5K Inflatable at Six Flags Great Adventure in Jackson, NJ!!  We are scheduled for the 8:30 am wave!  The sign up link is  http://insaneinflatable5k.com/jackson-nj/ .  When you register, make sure you join my team “Cathys Cause” and before you check out, make sure you type in the promo code “FSR” and they will donate a portion of the proceeds to the Foundation for Sarcoidosis Research!!

Saturday, October 15^th from 6 pm until 10 pm at Leggetts Sand Bar on First Avenue in Manasquan, I will be hosting the 6^th Annual Sarcoidosis Awareness Fundraiser.  The cost is $25 in advance and $30 at the door.  The cost includes a dinner buffet, one drink coupon, live entertainment by Don’t Know Jack and the Pipes and Drums of the Jersey Shore Shilleghahs, a gift auction, silent auction, and 50/50.  All of the money raised goes to The Foundation for Sarcoidosis Research.  To pay in advance, please send a check or money order to “Cathy Wick” at P.O. Box 582 Manasquan, NJ 08736 and your name will be added onto the guest list.

Thank you Cathy Wick!  You are amazing!  We support you and love you!