Rare NY

Wow 3 years ago yesterday. We had our "A Day for Rare Diseases." What an event!

On March 14, 2019 We as Sarcoidosis Patients, Caregivers, Family and Friends have a chance to be heard! We have billboards in Times Square dedicated for Sarcoidosis. We have the chance to be seen and heard! Please share this anywhere you can!!! FOR $25.00 You can get an ad for 15 seconds with either a picture or a 15 second no volume video of yourself the patient, caregiver dedication, family member dedication or a friend who either has or cares for a patient with Sarcoidosi...s. You also will need anywhere from 1-3 Sentences about Sarcoidosis and its affects on you or your friends and your family. Also please keep it clean! The charge of $25. goes as follows half goes to Five Tier and half goes towards the fundraiser. If we can get 4000 ads for the day we can raise close to 60k dollars. The funds raised are going as follows.I committed to 90% is going to Foundation for Sarcoidosis Research and 10% is going to Sarcoidosis of Long Island. This is a great way for us as a Sarcoidosis Community to Raise Awareness but also Raise Funds for a Cause and a Cure!! The link is working today. Go to the link and click on the $25.00 order fill out the order and they will contact you for the pictures and sentences. https://www.fivetier.com/product/partner-day/code/23/ See more

Okay I am able to make a big announcement for my organization, Sarcoidosis of Long Island. Today I signed for a billboard at Times Square for Rare Disease Day on February 28, 2019. It is a great honor to have my organization at Times Square. It will be running from 10am-10pm 30 times 15 seconds each time! I am so excited! It will have our new slogan for this year. "YOU ARE NOT ALONE!"

Today is the last day to endorse both Kerry Wong and myself for a WEGO Health Awards! Please take a minute to endorse me for the two nominations that I am hono...red to being nominated by WEGO Health . I was nominated for Patient Leader and the other is Lifetime Achievement Awards. It is very easy to endorse! Thank you so much for your support!!! A vote for me is a vote for Sarcoidosis and Sarcoidosis of Long Island and Foundation for Sarcoidosis Research Ambassador! https://awards.wegohealth.com/nominees/12538 Also vote for Kerry Wong at : https://awards.wegohealth.com/nominees/13010 See more

I want to Thank Nathan Davis for writing such a great story about me!! It got published on Thrive Global!!! https://www.thriveglobal.com//25259-my-life-as-a-rare-dise

Today is Rare Disease Day! Please show your support for the over 7000 Rare Diseases and over 30 million Americans who have rare diseases! I AM RARE! Only 5% of those 7000+ diseases have a cure!!