What’s a”natto” with you?

Perhaps you’re not eating enough Natto!

K2 is an interesting superfood I just discovered from one of our members. Different from K1 nutrition mostly found in veggies K2 is found in fermented foods like cheese and Natto. What’s Natto? Glad you asked. Natto is a Japanese dish that contains high quality K2.

I will be writing a blog about someone who claims he cleared from this superfood.


“Natto” a K2 superfood

Congressional leaders feeling the itch to relieve patients with psoriasis

With each year I attend the National Psoriasis Foundation’s Capitol Hill Day I become more and more familiar with the routine. I wanted to write this blog in order for you to understand exactly what goes on in DC both before and during our advocacy. Now mind you, there are many voids to fill in our community. I’m sure some of you have felt some of the inefficiencies of our Healthcare System. As we all know there’s a lot of issues and many dollars wasted because of the bureaucratic red tape. It’s up to our elected officials to do their job and to eliminate wasteful spending and to improve Healthcare as we know it. Let me assure you this is a bipartisan issue. My focus is to restore the authority to our prescribing doctors and to put the #patientfirst.

Nevertheless we are focused on the laws that govern our community. So first things first let me walk you through the day before Capitol Hill day.

Many of us who were invited by the National Psoriasis Foundation were either ambassadors or advocates. This year many people wanted to attend. That is why I never take it for granted and I’m honored to be part of this opportunity. So on the 19th of March I flew in to DC from New York in order to participate. Click the hashtag #NPFADVOCACY for more stories about this day.

Our Mission: To Drive efforts to cure psoriatic disease and improve the lives of those affected. (NPF)

Before our trip to DC we had a hour long conference call that briefed us about what was to take place on that day. I’m glad the call was recorded so this way I was able to listen once again in order to know what is expected of me. The call started promptly with our federal Government Relations VP Patrick Stone and our Government Relations and Health Policy Manager Jessica Nagro. The call was on point and very resourceful. Also on the call was Amy Prentice who is also part of the NPF Advocacy team.

So the night before Capital Hill day we had a prep dinner hosted by the National Psoriasis Foundation. We receive training packets that was loaded with information in order to prepare us for the next day. Patrick Stone once again started us off. Leah Howard COO of the NPF also spoke and brief us about our organizations mission. Jessica Nagro spoke about the information in the packets. The seating was by states. This way we could practice our lingo in order to prepare. Patrick Stone had four people role play the office visit. They acted out three scenarios each one better then the other. The first act they mentioned the wrong disease state…we all had a laugh.

So that night I was extremely restless, I didn’t get much sleep. I later contributed it to the supposed decaf coffee I consumed at dinner. Anyway, needless to say I was early for breakfast. This isn’t my first rodeo so I went down in my NPF cycle shirt and jeans. Everyone else was in their suits. ( I’m thinking newbies) Said my hellos and went back to my room to change. Dressed up and got ready to give them the “what for”.

I was very happy with our team. We had a student doctor and a lawyer. We also had Heather Miller who lead the way. We were well prepared. I brought a picture when I was covered in psoriasis. When that photo was taken I felt I had one foot in the grave. I was ashamed, alone, and extremely depressed.

I’m so proud that I was able to share my story with these elected officials. We spoke mostly to health policy staff members who seemed to like what we were saying. I wanted to bring a message that was relatable. I told them I was like everybody else who wanted to live the American Dream. I was a father of two impressionable children. A lieutenant fireman/EMT, a soccer coach, a business owner and a postal worker. All that changed when my disease became to aggressive to bare. Then I explained our “asks”, I thought they were reasonable. To me this fun. I love listening to my colleagues and hearing the feedback from these officials.

I would have to say all of the staff members agreed with our agenda. It was a bipartisan approach that put the #patientfirst. It just makes sense. I have to say our last meeting was my favorite for two reasons.

1. It was my district

2. We met with the member.

So exciting that we actually met with Representative Rooney from SW Florida. We saw him in action running around with papers in his office. We first met with his chief of staff and then got to shale hands with Rep Rooney in his office. It was there where I briefly told him the importance of our visit. I explained our asks and he was very in tune with our agenda. He struck me as a no nonsense sort of guy. Like a drill sergeant. He articulated very well. His last comments were that he looked forward to seeing me in SW Florida. Now you know I will be paying him a visit at his local office in our District… Knock, Knock, Knock.

Get involved, your voice matters. If you need to find me I’m usually helping others with our disease in our support group Overcoming Psoriasis at http://www.Facebook.com/groups/psowhat. If you want resources about psoriasis then I highly suggest visiting the NPF website http://www.psoriasis.org. Thank you for reading.. please follow and subscribe.

Did you know one in four prescriptions are filled as written?

Once again the National Psoriasis Foundation and it’s team of advocacy advocates will be heading to Washington DC to address the issues facing the psoriasis community. We will be talking to congressional leaders about our proposed Appropriations bill and Step Therapy bill. https://www.congress.gov/bill/115th-congress/house-bill/2077

These bills if passed into law will not only help the psoriasis community, but will also help other auto-immune disease communities. The one bill that addresses “step therapy” just makes common sense. The bill will simply fill prescriptions as written by your doctor. You will no longer need to “fail first” a less safer, less effective, less expensive medication before the original one is dispensed. Here is a copy of the letter that I sent to my congressman;

NPF template;

“As a constituent affected by psoriatic disease, I am writing to urge your support for a FY 2019 appropriations funding request to expand research in psoriasis and psoriatic arthritis.

The requested FY 2019 funding will build upon the foundation of the Centers for Disease Control and Prevention’s (CDC) public health agenda on psoriatic disease. Specifically, the $1 million request would support research on the connection between psoriasis and psoriatic arthritis and other chronic conditions. As psoriatic disease is one of the most prevalent autoimmune conditions in the country, it is critical that we invest in public health research to better understand the disease, its connection to other chronic conditions, and interventions to improve health, well-being, and quality of life.

Congresswoman Wasserman Shultz (D-FL) and Congressman Costello (R-PA) circulated a Dear Colleague letter earlier this week and I respectfully urge you to add your name to the letter. This modest funding will go a long way to advance care for the more than 20,000 psoriatic disease patients in your district and the 8 million affected nationally.”

Please contact Kaitlyn Lane in Rep. Wasserman Schultz’s office at kaitlyn.lane@mail.house.gov or Elle Ciapciak in Rep. Costello’s office at elle.ciapciak@mail.house.gov if you have any questions or need any additional information.

Sign On Link: https://docs.google.com/forms/d/e/1FAIpQLSepEKCKIqgCqfns1Ab-FErIRWKuthW9QRUEzS5JvG1HkZIgkA/viewform

I hope you will consider supporting the Dear Colleague and the funding request. I look forward to hearing from you about this request.

Your voice is important to our community. Your voice will fund critical research needed for better treatments and/or a cure. Your involvement will improve the SOP’s by which prescriptions are filled. Let’s stop the common practice of undermining our highly educated doctors and fill the prescriptions as written. Makes sense!

Contact the NPF and get involved http://www.psoriasis.org

Written by Todd Bello in collaboration with the National Psoriasis Foundation.

Ambassador to the National Psoriasis Foundation

Founder of Overcoming Psoriasis http://www.Facebook.com/psowhat

#NationalPsoriasisFoundation #psoriasis #psoriaticarthritis #NPF #chronicillness #overcomingpsoriasis #Senate

Show Your Psoriasis 

World Psoriasis Day 

This Sunday is World Psoriasis Day.  How cool is it that the entire world will be celebrating our cause Oct. 29th?  

Most of you know me from my support group Overcoming Psoriasis.  My name is Todd Bello and raising awareness about psoriasis has become my passion. 

I was first diagnosed with psoriasis at the age of 28 and it all started with a small scalp lesion. Red, raised, and itchy this spot wasn’t going away no matter what I tried. That’s when I got the diagnosis.  My dermatologist told me; “It’s Psoriasis”.  

I never even heard of this disease.  I couldn’t even spell the word.  All I knew is, I had to beat it.  I researched it high and low, spent countless hours chasing my tail. At the time it wasn’t classified as autoimmune disease. There wasn’t to much information or treatments available.  You see when I was first diagnosed smart phones didn’t exist and Facebook wasn’t even a thought.   

Thankfully things are different today.  Because of technology I’m able to order my medications with one touch of a button.  I can stay up to date on the latest medical breakthroughs.  And I can share my story and photos on Social Media.  

There are so many misconceptions about our disease.  Because it’s a visible disease people think it’s contagious and often feel stigmatized.  Social media is helping us get the word out that it’s NOT contagious and it’s “More than skin deep”.  

Which leads me to #ShowYourPsoriasis.

#ShowYourPsoriasis is a social initiative to encourage people like me and you to embrace their disease and share with the world via social media as well as using Imagine app.  #ShowYourPsoriasis would like to encourage people to feel comfortable when taking pictures of their skin.

The Imagine team is running this campaign as part of #WorldPsoriasisDay. Imagine app helps track your psoriasis and take more control of your autoimmune disease. Take a selfie for science and #ShowYourPsoriasis today.


How to take part? Just share a photo via social media and include the hashtag #ShowYourPsoriasis!

Have a sense of community on World Psoriasis Day and Show Your Psoriasis!  Have a wonderful day.

#psoriasis #psa #psoriaticarthritis #overcomingpsoriasis #worldpsoriasisday #NationalPsoriasisFoundation 

Incredible Transformation 

Today I write about a member of our support group Overcoming Psoriasis.  He joined our group right after he lost his young and beautiful mom, Deborah.  He was at the veterinarian attending to his beloved dying dog when he got the call about his mom dying from cancer unexpectedly.  He lost both his mom and dog within two days of each other.  Tyson W. Poole told me, “This caused my psoriasis to flare.” It was then he decided to do some research on the internet.  His search about psoriasis resulted with him finding our support group.  

I also experienced this when I lost my father a few years ago.  I will never get over the loss of my dad and I miss him dearly.  Unfortunately I also lost a dog about a year ago.  I can relate to the pain and the stress that Tyson experienced. Psoriasis can be triggered by situations like these. I’ve read many stories about people in similar situations that experienced a bad flare during stressful and emotional situations.  

Tyson is 35 years of age and lives in North Carolina.  His psoriasis started at the age of 22.  His disease primarily affects his hands, feet, scalp, ears, and right arm.  I asked him if any of his family members had psoriasis?  He replied, “Nobody in my immediate family and none of my aunts or uncles has psoriasis.”  He does however have a cousin who was covered with psoriasis.  According to reseach, a person has to be predisposed in order to manifest the disease.  It is believed that psoriasis will only present itself if you have an inherited gene.  It’s possible to go through life with these genes never being triggered. Scientists are still trying to figure out how to turn this expression of the gene or genes off.  If you want to learn more about the exact science, I suggest you explore the resources at the National Psoriasis Foundation.  

100% cleared using Stelara by Janssen. Never give up!

Tyson was a forklift operator at a lumber yard and a huge fan of NASCAR.  Like most people who develop severe psoriasis, it affects every aspect of your life including your career.  Tyson tried many treatments in order to gain control of his disease.  He used countless topicals ointments and creams.  He also failed a well known biological medication that is a TNF inhibitor.  He was then prescribed an oral medication that wasn’t successful.  Tyson’s psoriasis was very stubborn.  Using the advice from our members he never gave up.  His doctor was wasn’t up to speed on the latest treatments and was hours from his home.

Tyson needed a more convenient doctor who was knowledgeable about our disease. Fortunately he found a doctor that cared and found a treatment that worked.  His doctor prescribed him Stelara.  However, it wasn’t until the third shot of Stelara that completely cleared his disease.  He felt it working after the second shot and noticed slight changes with his plaques.  These injections are taken every 90 days so it’s important not to lose hope with a particular treatment. 

Tyson’s experience with our disease had a negative impact on his life.  People treated him differently.  Tyson said people wouldn’t want to associate themselves with him. Tyson often felt humiliated in public referred to our disease as a living nightmare.  He eventually lost his self-confidence and isolated himself from society.  Even family members disassociated themselves from him.  Because our disease is visible and unsightly, many people have the misconception that it’s contagious. Psoriasis is not contagious.  Most people don’t realize that psoriasis is a serious autoimmune disease and that the commorbitities can have grave consequences.  It got to a point where Tyson couldn’t walk or handle things due to the pain.  His life became unbearable.  

Because of Stelara, Tyson regained his quality of life.  The medication works by blocking the pathways of IL-12 and IL-23. Tyson is a big fan of Nascar’s Kyle Busch.   Tyson now feels comfortable in his own skin and feels that he can conquer the world.  With his new lease on life he hopes to one day meet and shake hands with Kyle Busch.  Tyson lives 20 minutes from the maintenance shop of Kyle’s car and visits there often.  He is considered a regular and views the cars being worked on as a spectacular behind the viewing glass.   I hope and pray Tyson gets to meet Kyle in person so his dream will come true.  Tyson is an inspiration to us all in the psoriasis community.  

These medications are not cures and are temporary at best.  There is no “one size fits all,” so more research is needed in order to develop a cure.  When I was first diagnosed over 25 years ago none of these medications existed.  Scientists need research funds in order to unlock the code of this insidious disease.  That’s why I volunteer for the National Psoriasis Foundation.  As an ambassador, it is my job to raise awareness and to help educate others about this misunderstood disease. Many people don’t know that psoriasis affects the joints, tendons, ligaments, and organs. Inflammation throughout the body causes so many other ailments.  I believe we are so close to finding a cure.  Please consider joining me and the NPF and let’s eradicate this disease forever.  Let’s spare future generations from the embarrassing effects of psoriatic disease.  Sponsor team Overcoming Psoriasis for our walks and cycling events through the NPF.  The NPF is an accredited organization voted by Consumer Reports.  

NPF #FlauntYourFlares Instagram Campaign: NPF will be launching an Instagram hashtag campaign to coincide with the first day of summer, Tuesday June 20th. The campaign is called #FlauntYourFlares and is designed to encourage people with psoriasis to not let a flare stop them from enjoying a healthy, active lifestyle. We want people to know that though they are treating their psoriasis with medication flares are a reality of psoriasis and can happen at any time. We are asking people to post a photo of themselves during a flare on Instagram and to include an inspirational quote and the hashtag #FlauntYourFlares. Throughout the summer, NPF will highlight one winner a week via NPF social media channels and a second winner will be selected to receive a summer healthy lifestyle kit. 

The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th.  This will also fill up so order your tickets here.  We use the hash tag #NPFNVC2017 

Go “Big” or go home! NPF Gala Celebration 

Go “BIG” or go home.  Well it doesn’t get bigger than the grand ballroom at the Plaza hotel in NYC.  Once again the National Psoriasis Foundation leveled up their (our) fight against psoriasis and psoriatic arthritis.  Last night over 400 guests pack into the Plaza.  These guests were from all over the country.  We gathered to honor Dr. Gerald Krueger and Mr. Dale White.  

I wanted to share with you my experience, but first let me introduce our honorees. Dr. Krueger is a Professor of Dermatology, Benning Presidential Endowed Chair University of Utah School of Medicine – Dermatology Former Chair and Chair Emeritus, NPF Medical Advisory Board Member, NPF Research Committee Member, NPF Scientific Advisory Committee.  Honored as the most influential physician.  After hearing him speak last night I can see why. 

And Mr. Dale White, Excutive Vice President, Sales and Account Management, Multiplan, Inc.  Former Chair, NPF Board of Directors.  Honored as the Most Influential Volunteer.  

My role amongst several other outstanding volunteers was to greet and seat the guests as they arrived.  As people enter the reception and registration area they were greeted with drinks and appetizers.  The rooms were magnificently decorated with gorgeous flowers and wall coverings.  All attending were dressed to the nines.  It looked and felt like a red carpet celebration.  The only thing missing was Access Hollywood asking people who designed their wardrobes.  

The NPF is celebrating its 50th year driving, discovering, and creating a community that is patient driven.  We have a common goal and that is to end this insidious disease through research.  Our 50th Celebration Gala Chairs for the evening were Carol Ostrow and Michael Graff.  Two of the warmest people you will ever want to meet.  They are always so generous with their time and money.  They are caring and loving.  We need more people like Carol and Mike in the world.  

The night started off with a speech from the NPF Board of Directors Chair, Colby Evans, M.D.  He touched upon the last 50 years and how we look to a future free of psoriatic disease.  He thanked our long list of Honorary Executive Committee members including; Randy Beranek, Dr. Colby Evans, Dan Farrington, Jodi and William Felton, Dr. Krueger, Mike Laub, Dr. Liu, Carol Ostrow,  Pete Reading, Richard Seiden, Terri Theisen, Karen and Dale White.  

And our Honorary Committee members Dr. Bagel, Dr. Koo, Dr. Lebwohl, Dr. Menter, Dr. Feldman,  Dr. Gelfand,  Dr. Lockshin, Eyal Ofir, Dr. Van Voorhees, and Dr. Williams. 
And none of this would if been possible with out our Premier sponsors; Anonymous,  Mike and Carol Laub, The Ostrow Family. PlatI number Sponsor, Janssen.  Gold sponsors; Abbvie, Lilly, Leo, Novartis, Pete and Lorelei Redding.  Sliver sponsors; Celgene, Pfizer, Sun Pharma.  Bronze Sponsor; Amgen, Dermira, Aqua, Strata, Multiplan, Valeant,  Randy Beranek,  Colby and Sarah Evans, Dan Farrington, The Grau Family, Dr. Krueger,  Dr. Liu,  Richard and Ellen Seiden, Theisen Consulting,  Christina Tom and Family.  And our Corporate Table sponsor; UVBlock. 

We had some great entertainment from the cast of Kevin Can’t Wait.  Christopher Brian Roach, and Lenny Venito.  They served as our Emcees for the evening.  I was fortunate to catch this on video.

Then we proceeded with the live auction where our audience members were most generous.  The Auctioneer was Mark Schenfeld.  He did a marvelous job raising funds for our cause.  

Kathleen Gallant, MPA,  spoke about her struggle with pso/psa since the age of 12.  She formed a support group and was on the board for the NPF.  She is now on the board of the International Federation of Psoriasis.  Her story is unique yet similar and she speaks from the heart.  She goes on to say; “I will never say Psoriasis is a blessing”.  However she embraces the friends and relationships our community has afforded.  I have to agree with Kathleen in that regard.  

The night ended with videos and speeches form our Honorees. Coffee and dessert was served and we wrapped the night up with over 2.2 million dollars raised.  This night was a huge success and I was happy to be invited to serve as a volunteer.  Things ran extremely smooth thanks to our CDM Kimberly Schleyer.  

On a personal note I wanted to thank all those who volunteered their time and participate in this 50th year Gala Celebration.  We are making history and our efforts will curb the suffering for future generations.  

I would also like to thank Healthline.com for voting this best blog of 2017.

This Event was sold out and it took place at the Plaza Hotel in NYC on Thursday June 8th.  Hash tag #NPF50th


The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th.  I am proud to say I am a finalist for OUTSTANDING VOLUNTEER.  This will also fill up so order your tickets here.  We use the hash tag #NPFNVC2017

This month:

NPF #FlauntYourFlares Instagram Campaign: NPF will be launching an Instagram hashtag campaign to coincide with the first day of summer, Tuesday June 20th. The campaigned is called #FlauntYourFlares and is designed to encourage people with psoriasis to not let a flare stop them from enjoying a healthy, active lifestyle. We want people to know that though they are treating their psoriasis with medication flares are a reality of psoriasis and can happen at any time. We are asking people to post a photo of themselves during a flare on Instagram and to include an inspirational quote and the hashtag #FlauntYourFlares. Throughout the summer, NPF will highlight one winner a week via NPF social media channels and a second winner will be selected to receive a summer healthy lifestyle kit. 


Men’s Health Week Begins June 12th: In honor Men’s Health Month (June), NPF will share stories of men living with psoriatic disease to inspire men to talk more openly about the disease and to contact the Patient Navigation Center for help finding specialists, getting support and taking charge of their health. Stories will be shared via the NPF Blog and Advance and social channels. Additionally we will be hosting a specialFacebook Live event on Thursday, June 15th at 12pm Eastern / 9am Pacific. During this event, NPF will talk with NPF volunteer Chris Pettit about fatherhood and psoriatic disease. In honor of Men’s Health Month, Chris will share his story about living with psoriasis – from adolescence to parenthood. RSVP for this event at https://business.facebook.com/events/1397886496926495/


Greenwich Concours d’Elegance 

June 2017 was the 22nd annual Greenwich Concours!  Recognized as one of the most prestigious concours in the country, Greenwich is unique for the fact it has two concours in two days consecutively. Saturday June 3rd was the Concours Americana and Sunday June 4th was Concours International.  I was delighted to be invited by my friend Bobby Daddino who owns a 1983 Lamborghini Countach.

If you are a car enthusiast you’re gonna want to put this on your calendar for next year’s concours.  Saturday’s line up included supercars of both American and foreign.  Bobby and his “blackbull” Lambo was stage in this circle of gems.  Parked right next to us was a “one-off” P 4/5 Ferrari designed and own by James Glickenhaus.  Director and producer of the movie exterminator.  I actually had a chance to interview this brilliant man. Among the cars in the circle were a Pangani, Lamborghini, Ford GT, LaFerrari, Lotus, and Porsche.  Three awards were given in this circle of historic automobiles. I’m happy to say the “poster” child of super cars won best in class, B. Daddino’s Lambo. The P 4/5 and LaFerrari also received this honorable concours award. 

I wanted to share with you my gallery of photos that I took with my Samsung Galaxy Note 4.  I hope these pictures can give you a flavor of the event.  Enjoy!

NPF’s Pedal for a Medal

Many hours went into planning our cycle event in the Hamptons.  As the outreach chair it was my job to raise awareness about the event.  This was the second annual ride which took place at the Duckwalk Vineyard located on Montauk Hwy in Watermill.  I always wanted an event to take place on the Island and I’m glad this one came to fruition.  The idea came about at the inaugural ride in New Jersey.  I spoke to the pharmaceutical company that sponsored that event.  I mentioned that I would love to have a cycling event on Long Island and the rest is history.  

You heard the phrase “April showers bring May flowers”.  Well somebody better let mother nature in on this.  Apparently the new April is May.  The weather forecast predicted 100% rain for the day of the event scheduled May 13th.  It was a week out and the forecast held up the entire week.  I’m thinking, “please no”.  So that morning I woke up at 3am.  I couldn’t sleep.  I looked out the window and there was no rain.  It was overcast and the morning was to remain dry until 10am.  Now mind you, this is a “rain or shine” event.  Well our prayers worked, the rain held off until 3pm.  The cyclists that came remained dry and we’re able to complete their routes.  

I was most proud of my son Michael who informed me two weeks out that he would ride for our cause.  This thrilled me.  He didn’t even own a road bike.  Michael took it upon himself to order a bike so that he could participate on his Dad’s team.  I wanted to ride along side of him but the foundation needed volunteers for the rest stops.  I’m #pso proud of him as a Dad.  This is such a great event I want to see it grow exponentially.  Next year my daughter and her boyfriend will be joining us for the ride.  

I wanted to mention all the teammates of Overcoming Psoriasis that help raise 5 thousand dollars for the NPF.  They are Mary B., Steven F., Ellen, Mike and Tim B., Michael B., Jacquelyn B., Kevin, Wendy R.. I would also like to thank all those who sponsored us from our support group OP. 

None of this would be possible without the help from our CDM Kim S. and the cycle coordinator Kris B. and Chris P.  Plus our generous board members who host the party the night before Carol O. and her husband Mike. And of course our chair Joe C.  and Frank Doris and his band.  

Although this ride is not a race, we are in a race to find a cure.  I’m sure with the help of our sponsors #Novartis, #Janssen, #Lilly, #Leo and others a cure is not out of the question.  I’m looking to set a goal of 100k for next year’s event.  It’s going to take a village to find a cure for this insidious disease.  The funding will help scientists with research.  So let’s kick some psoriazz and accomplish our mission so future generations don’t have to suffer in silence. 

  The National Psoriasis Foundation turned 50 this year.  Psoriatic’s around the world are celebrating this historic year.  For celebration purposes the NPF will be throwing a huge party for us all.  This will take place at the Plaza Hotel in NYC on Thursday June 8th.  Seats are limited so order tickets here.  Hash tag #NPF50th

The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th.  This will also fill up so order your tickets here.  We use the hash tag #NPFNVC2017

Upcoming Events for Psoriasis and PSA hosted by the National Psoriasis Foundation

#Pso this week was Psoriatic Arthritis
Action Week.  May 1st to May 6th was dedicated to individuals with PsA (click on here).  I filmed this video yesterday sharing my experience with my self-injections of Cosentyx.  This was mainly a how to video, but I feel it also demonstrates my success with this treatment.  If you watch the video you will see where I inject my legs and how they remain astonishingly clear.  If you look closely you will see no swelling in my feet and ankles.  The only spots remaining on my skin are the hyperpigmentation areas. Although some people complain about these remaining spots, I’d much rather have these non active areas then the painful, red, itchy, flaky, embarrassing lesions. #PsAactionWeek 

As an Ambassador for the National Psoriasis Foundation I take great pleasure raising awareness about this insidious disease.  Everybody has a unique experience with this disease.  Everyone’s journey is different.  If your struggling with your disease I would encourage you to call the Patient Navigation Center

The National Psoriasis Foundation turned 50 this year.  Psoriatic’s around the world are celebrating this historic year.  For celebration purposes the NPF will be throwing a huge party for us all.  This will take place at the Plaza Hotel in NYC on Thursday June 8th.  Seats are limited so order tickets here.  Hash tag #NPF50th

The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th.  This will also fill up so order your tickets here.  We use the hash tag #NPFNVC2017

#Pso much more to talk about… As usual I will be volunteering in two cycling events this year.  On Saturday May 13th in the Hamptons NY we will be pedaling for a cure.  Join or sponsor our team Overcoming Psoriasis click here.

This is the other ride in Ringoes NJ the following Saturday May 20th.  Support team Overcoming Psoriasis click here.

Stop Thief ….

You’ve heard the robbers expression “your money or your life”.  Well some would argue the choice, provided there isn’t a gun pointed at your head or a knife at your throat.  If you are trained in martial arts and given those options, that thief most likely is going to experience the unexpected.  If you’re a normal citizen then the obvious choice would to hand over your wallet.  These comparisons are quite different with different outcomes.  I argue the similar choices are given to an individual when they are inflicted with a serious illness.  Or in my situation, a serious autoimmune disease, psoriasis and psoriatic arthritis.  

Psoriasis is a very frustrating and insidious disease.  When I was first dignosed I had no idea what I was up against.  This disease became my thief.  As this disease progressed it stole more of my life as I knew it each and everyday.  My ambitions and my dreams were slowly being diminished.  My thoughts became “why me” and “how is this happening to me”.  My only fight was to educate myself about this serious autoimmune disease and try to remedy the problem.  This was like having a gun pointed at my head.  It all happened so fast.  I needed to become my own health advocate.  Where would I be if it wasn’t for the resources afforded to me by the National Psoriasis Foundation.  

The NPF has become my sensei.  My new life’s lesson began over 25 years ago.  This became more than just a hold up, this became a hostage situation.  My thoughts shifted from personal gain to personal health.  My doctor told me psoriasis was a chronic disease and there is no cure.  I can laugh now thinking to myself “nah, I’ll just have the upset stomach and be done with it”, from my doctor’s health menu.  How was I to support my family and juggle this relentless disease?  My life was taking on water without a bilge pump. 

I needed to learn everything there is to know.  I slowly was gaining ground on this disease.  Even with all my research, I discovered that we really didn’t know much about this serious autoimmune disease that dated back to biblical times.  Science needed to catch up quick if I was going to have any chance to improve my quality of life.  I did everything and anything to help find relief.  I even signed up for a few clinical trials.  I remember saying to the physician’s assistant at the time, “imagine if we could take a shot and our psoriasis would go away”.  Let’s just say this, I did a lot of praying.  

Let’s make a long story short.  Our space is finally getting attention due to some major discoveries.  I remember reading in the Advance Bulletin years ago that scientist discovered a gene responsible for our disease.  This sparked my interest in science.  I started reading up on and the molecular make up of DNA.  TNF inhibitors, interlukins, cytokines, dendritic cells, T-cells, JAK inhibitors, heterodimeric receptors, keratinocyte proliferation.  I tried reading abstracts and theories, but not fully understanding what was being said. Websites like pubmed.gov and the NIH and JAMA, intrigued me.  The conversation was above my intellect. 

The current medication I’m on targets IL-17a.  The medication binds with these proteins and eliminates the symptoms of psoriasis and psoriatic arthritis.  But there is newer science that goes beyond that.  

Monoclonal antibody treatment targeting both the common p40 subunit and the IL-23 specific p19 subunit have demonstrated outstanding clinical efficacy. 

The new discoveries have me very excited.  I’m looking forward for the approval of these medications that use this science.  It won’t be long now that these medications become available. 

Psoriasis is a complex, multi-factorial autoimmune disease, with many complex immunogenetic contributions. Despite our increase in knowledge about disease pathogenesis and the identification of predisposing genetic risk factors in the form of SNPs, there are many unanswered questions. 

And this article goes on to say;

It is not unreasonable to speculate that in the future, personalized medicine and specific immunomodulatory treatment will be based upon genetic alterations in particular immune genes.

To summarize all this, our best defense is a stong offense.  In other words, we have to become our own advocate. Knowing that we are not alone in this fight.  Don’t let this disease steal your dreams and ambitions.  Fight back with knowledge and a better understanding of our disease.  Our disease doesn’t define us. Make it empower you. Work together with your doctor.  Find a treatment that works.  Although our journeys are different, our goals are the same.  Use all the available resources available to you.  I wish you and your family health and happiness.  Have a blessed day. 

One more thing, the National Psoriasis Foundation turns 50 this year.  We will be celebrating this event all year.  The actual party is on Thursday June 8th, at the Plaza Hotel in NYC.  Here is the link;  https://www.psoriasis.org/50th-celebration #NPF50th

Also, in honor of their volunteers, the NPF is planning a National Volunteer Conference and Research Symposium in Chicago IL August 3-5 at the Swiss Hotel. Visit https://www.psoriasis.org/2017researchsymposium
This week May 1st through the 6th; visit https://www.psoriasis.org/media/press-releases/national-psoriasis-foundation-launches-inaugural-psoriatic-arthritis-psa-action

National Psoriasis Foundation (NPF) is proud to launch its first-ever Psoriatic Arthritis (PsA) Action Week, a campaign that aims to provide concrete ways to better live, work and play with PsA while providing information about diagnosis and treatment options

And last but not least, Saturday May 13th, the NPF will be hosting annual Cycling event.  I am the outreach chair for this event and I’m happy to announce that we are on schedule to surpass last year’s numbers.  If you would like to support our team visit, https://npf.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=7213


Quotes provided to you in this blog are from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4628849/