I Thought Staying Home Was Going to Be Boring.. Boy Was I Wrong!

I decided that due to my health I was going to concentrate on Volunteering as a Foundation for Sarcoidosis Research National Ambassador for statewide, New York, but boy do things change …

So this year started out with me getting another problem diagnosis.. something I will discuss at a later time. So with that I had to go on a higher dose of Prednisone and I also started to have tremors more pronounced. Some of it was the Prednisone doing it to me, and some of it is the progression of the Parkinson’s. It has at times even bothered my speech. I noticed it a lot at my FSR Ambassador training class. I know some of it is me being self conscious but I know I have been getting worse. I thought pulling back was good for my health. I realized after time all that did was get me depressed more and more. I was to the point of giving in. I knew I couldn’t and wouldn’t. II am too strong to do that! I needed to have some source of life balance. That is when I decided to go back to advocating!

With that being said I have been doing things to help FSR and also my organization, Sarcoidosis of Long Island mostly from home. I realized that there are too many people in New York that have Sarcoidosis.

That scares me and hurts me. Why you may ask? Well when I was misdiagnosed in 2004, I felt all alone. When I went through 4+ years of chemotherapy and radiation, I felt all alone. When I was finally diagnosed, Sarcoidosis, in 2011, I had family but had nobody to talk to about this disease. I vowed never let anyone else feel this way.

I know I can’t save everyone, heck I can’t even save myself at times. I also know I am not God, nor do I want to be. What I do want is to be here for people and I want people to know that:

YOU ARE NOT ALONE!!

So I decided that is going to be Sarcoidosis of Long Island’s montra! I had to make a plan on how will people actually know that Sarcoidosis of Long Island and Foundation for Sarcoidosis Research are here for them, the patients, the family, and the caregivers?

So I decided that I needed help and I needed to get my name out there! I have been looking for new and different ways to raise Awareness!

I started by going to the people that have been my biggest supporters Town of Brookhaven councilmembers, Valerie Cartright and Jane Bonner. I asked them for their help. I am not usually one to ask for help, but I knew that what I was doing wasn’t working enough. Then I went to my support from Suffolk County Legislators, Sarah Anker, Kara Hahn, Leslie Kennedy and of course Dr. William Spenser. I am so glad I did. I received so many great tips and great ideas.

Well let’s start from February 2019. I was scheduled to go to a Health Fair locally by Kara Hahn’s office. Unfortunately it was cancelled due to the weather but it truly was just a start for me and my organization.

My Town Council Members were amazing and gave me some leads like the talking to civic associations. That panned out, I received two invitations to speak at their association meetings in April.

Then the Jane Bonner and Valerie Cartright asked me to speak at the Talk of the Town local television station. I will be interviewed on March 13, 2019. It is a great place for me to not only advertise all that is going on but more importantly to raise awareness for Sarcoidosis and Sarcoidosis of Long Island.

YOU ARE NOT ALONE!

Then I received help from all of my Suffolk County Legislators so I can speak at their Board meetings. Then Dr William Spencer offered me to speak at the their Health Committee meeting both in March. So you would think that is pretty good and filled enough, wouldn’t you think so…

So me being me I went looking for more and more found me too. I guess good things happen to good people some times, not that I am good. I was contacted by Five Tier Media and Marketing. He asked me if I wanted to have a billboard for Sarcoidosis of Long Island on February 28, 2019. Well it was a special for Rare Disease Day. I was so delighted. I never thought that I would ever be able to afford it, but it truly was reasonably priced so I tried it. I am beyond grateful I did.. The Billboard is in Times Square, 42nd Street and 7th Avenue. I had 30 ads at 15 second for each ad. It was truly amazing! I will put a picture and a video of the Billboard for all to see!! You would think that was it for the Billboards, but no! We are actually doing a fundraiser with the Billboard on March 14, 2019, so I will be in NYC to see the billboard and from there I will be taking a VIP tour of Citifield to discuss partnering with the NY Mets for opportunity to fundraise and raise awareness. If you want to know more please feel free to contact me for the information. But I do have to say Rare Disease Day was truly amazing. I went to NYC on Rare Disease Day, saw The View and was able to mention Rare Disease Day. Met a great lady Brenda another Rare Disease patient and advocate at The View. She is truly amazing! We talked about how we can collaborate and help the community instead of working against each other. On March 24, 2019 I am being honored by TBRNEWSMEDIA as one of Town of Brookhaven people of the Year.

So March is pretty much a full calendar, considering I still have Dr. appointments for my declining health. I know I am doing a lot but it actually fuels me. I need to have a purpose, but I also need to balance my family too. I believe I am doing both, because all of my events are not far. I am trying to be busy, but be smart at it.

April is Sarcoidosis Awareness Month. so to say I am slowing down would be ridiculous. I will just start at the beginning of the month and go from there!

April 1, 2019- The View-

A bunch of us Sarcoidosis Warriors and Caregivers are going to the View. We wear our purple and let them know all about Sarcoidosis.

April 2, 2019- Buffalo Wild Wings Centereach NY 11720-

We are having a local restaurant fundraiser at Buffalo Wild Wings it is more than just making money. It is to truly raise Awareness for Sarcoidosis and the events that are coming!

April 7, 2019- KISS Westchester Sarcoidosis Walk ‘n’ Roll- 9:30am-12pm

This is the first of three Walks we are having in NY! This walk is being run by my good friend and fellow National Ambassador Kerry in Westchester. Her link is here to join: https://stopsarcoidosis.rallybound.org/KISSWestchester2019 .

April 9-10, 2019- The Today Show, Dr. Oz and Good Morning America-

Sarcoidosis Warriors are going to NYC to The Today Show on the 9th morning to raise awareness then in the afternoon we are going to Dr.Oz on the 9th. On the 10th we are going to Good Morning America.

April 13, 2019- KISS Queens/Long Island Walk/Run- 9:30-1pm

Number 2 of the Walks. This event is being run by another one of my friends and National Ambassador Cheryl is in Nassau County Long Island, Oceanside. Her link to join is:

https://stopsarcoidosis.rallybound.org/KISSQueensLongIslandWalk2019

April 14, 2019- Sarcoidosis of Long Island Support Group Meeting- Mather Hospital- Port Jefferson, NY- 6pm-8pm

We are celebrating Sarcoidosis Awareness Month by inviting anyone who wants to learn about Sarcoidosis. We will be having Town, County and State government officials. and others here to show their support for Sarcoidosis.

April 20,2019- 5th Annual Sarcoidosis of Long Island KISS Walk- 9:30am-12pm

The last of the Walks is being run by me and my Organization. The event will be at Heritage Park Center- Mt. Sinai Suffolk County Long Island.

Here is the link for more information: http://fjr311.wixsite.com/sarcofliwalk

So as I said pretty busy for the next two months. It seems I would stop there… Nah!!

July 13, 2019- Brooklyn Cyclones NY Mets Minor League team game-

Sarcoidosis of Long Island and the Brooklyn Cyclones will be joining together to Raise Awareness and Fundraise. Hanna Curtis,12, our little Sarcoidosis Warrior Sister will be throwing out the first pitch. She will also be having a day of her life: Check this out!!!
https://youtu.be/0tdZQMTXJV0

We will be selling at least 50 tickets to the game at $20.00/ each ticket
On-Field Pre-Game Presentation & Video PSA
First Pitch Opportunity- Great way to reward a volunteer
or use as an auction item prior to your game to help raise
funds
Host a FREE Activation Table on the concourse
Public Address Announcements promoting your charity at
the game
Charity Logo & direct link featured on our Charity Partner
page at BrooklynCyclones.com
Charity Logo featured on our Charity Partner page in the
2019 Brooklyn Cyclones Game Day Program

Have the chance to raise money at your Activation Table
Receive control of our “Winning Prize Wheel”!
We provide you Cyclones promotional items and you receive
100% of the proceeds
*Only one charity per game will be permitted

I am writing this not to brag. I wrote this because I wanted people to see that if you set your mind to do something even on a small scale statewide you can do it! I am truly trying a whole bunch of new things this year! I decided to get out of my comfort zone and try new things. Why? To let you all know:

YOU ARE NOT ALONE!

I may be overdoing it. Probably so. But I want to let others have a chance to find us! Too many people are dying from Sarcoidosis and too many have committed suicide thinking they are alone. I can’t let that happen!!

So as I said earlier I thought I would be staying home, but I guess not!!

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

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