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 

https://youtu.be/NhB282VeJs8
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

Footnotes:

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

 

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Livestream Video with Todd Bello on Psoriasis and Psoriatic Arthritis 

While at a conference in Chicago, I was asked to speak about my advocacy.  This event is one of my favorites.  The people who attended were advocates from around the country and from various disease states.  Those who are selected have campaigns in place and use social media in order to help others.  These advocates are volunteering their time.  They are what we call in our community, Psuperheros!  

Patient advocates are compassionate and very knowledgeable about the challenges facing their community.  Let’s face it, Healthcare is a complicated subject.  Thanks to this venue we are able to make sense of it all.  These PA’s are seemingly creative.  They go above and beyond all expectations.  The way I see it is when something steals your dreams and ambitions, I’m fighting it back in any means possible.  Social media has helped me raise awareness for our community.  
Thanks to Janssen Pharmaceutical and their vision to partner with patients, HealthEVoices was born three years ago.  This year 105 advocates participated and we all met at the Swiss Hotel.  All accommodations and travel was paid and sponsored by Janssen.  The Tonic team works diligently all year to set up this wonderful event.  Nothing is left out. 

This year I was asked to participate in a video interview with a friend of mine from the HIV community, Josh Robbins.  @I’mstillJosh has a huge following and also has a talk show.  I felt very comfortable speaking on camera with him. He is very professional.  Being in front of the camera has been a hang up for me.  I’m challenging myself to be more articulate and share vital content.  I’m a work in progress. 

Healthline partnered with HealthEVoices and is responsible for this video.  I hope you enjoy my story.  Thank you for your feedback. 
Here is the clip. https://m.facebook.com/story.php?story_fbid=1915928381978274&id=100006833921341

Smiling in the face of adversity

My Arm

My name is Todd Bello and I’m from New York.  I was diagnosed with psoriasis at the age of 28. Unfortunately psoriasis is a chronic autoimmune disease and there is no cure.  One misconception about psoriasis is that it is “communicable”.  Because psoriasis is visible and looks similar to poison ivy, people may feel concerned they can “catch” the disease.  My message and the message from the entire psoriasis community is that psoriasis is not contagious.  

My psoriasis started with a small red spot on my scalp that wouldn’t go away.  I went to a dermatologist who confirmed it was psoriasis.  I never even heard of psoriasis before that day.  I was very concerned. Since then I did a lot of research and I found out there is no cure and it’s a chronic autoimmune disease.  I’ve tried so many treatments. 

I’ve been in four double-blind studies. I signed up for these studies because nothing at the time was working.  My psoriasis eventually covered me from head to toe.  I later on developed psoriatic arthritis as determined from a rheumatologist.

I’ve tried everything imaginable including photo therapy, the Dead Sea, Skin Cap, Acupuncture, Herbal remedies, Dr. Pagano, Tanning, Raptiva, Embrel, Engineered Tuberculosis Injections, Gluten-Free, Diets, Topicals, Exercise, Hot Yoga, Healing Masses, Steam Baths, Sulfur Baths, Epsom Salt, Spring Water, Florida Natural Spring Soaks, Steam Rooms, Saunas, Tanning Booth, Chiropractic Adjustments, High Colonics, Dovonex, Talconex, Sulfasalazine, Coal Tar, Florida Sun, Aleve, Cortisone Injections etc.  I turned 55 this year and I’m still determined to help find a cure.
I have two wonderful children that love and support me. I have a great network of friends through the National Psoriasis Foundation.  Because this is a chronic illness I fight it each and everyday.  I decided volunteer my time and to help others by raising awareness. This disease knock the crap out of me and I want to prevent that from happening to others. I’m glad that my Cosentyx injections are keeping both my psoriasis and psoriatic arthritis in check.  I’ve been on Cosentyx for over 2 years now and it’s extremely safe and effective.

I’m excited about all the medical break throughs for our disease state.  I’m also very thankful to the National Psoriasis Foundation whose mission is to raise funds for resarch.  Many pharmaceuticals companies are investing time and money for better solutions. When I was first diagnosed the only treatments available were coal tar, topical cortisone, methotrexate, light box, puva, and cyclosporine. I voluntarily signed up to participate in four clinical trials because nothing was working. The new biological medications target specific pathways of the immune system leaving the rest of immune system intact. There is a new drug in the pipeline that blocks IL-17. I heard the results are outstanding.  These treatments are available to patients with moderate to severe psoriasis.  

I enjoy helping others so I started a support group called Overcoming Psoriasis.  The group offers advice and emotional support and is very informative.  If you have psoriasis or psoriatic arthritis please consider joining.  Thank you for reading.

We will be having a cycling event on Saturday May 13th.  I would love to beat last year’s numbers.  My Goal this year is to raise 10k. I need sponsor’s and cyclist.  The National Psoriasis Foundation is rated among the best charities as per consumer reports. Please email me if interested tvsoccerdad@yahoo.com thank you for your consideration.  

#psoriasis #psoriaticarthritis #psa #Janssen #NPF #Novartis #Lilly #Amgen #Abbvie #Celgene #Cyclists #Bikeshops #plaque 

World Psoriasis Day 16

What a fantastic gathering last night at the 7 World Trade building in New York City.  Leo Pharmaceuticals sponsored an outstanding event.  World renowned doctors attended along with many pso/psa patients.  I was honored to be an invited guest.  As a patient Influencer in the psoriasis community I would like to extend a warm and very much appreciated thank you.  Companies like Leo Pharmaceuticals provides us with hope. 

This is the second time Leo Pharmaceuticals sponsored an event like this in NYC for World Psoriasis Day.  I was very much impressed with each and every presentation.  Leo understands the seriousness of our disease.  For instance, a speaker by the name of Mike from PSOHAPPY is analyzing the emotional impact of psoriasis and the affect on the patient. 

I’m confident Mike will show the world that psoriasis is “not just a skin disease”.   More and more patients are speaking out to inspire others.  These patient Ambassadors are critical to the psoriasis community.  Their stories and voices are so powerful to someone who is feeling beaten down from this disease.  Hearing them speak may encourage a person to get the help they need.  

Kayla and Thomas shown above in these photos are volunteers for the National Psoriasis Foundation.  They have powerful voices in the psoriasis community.   I want to encourage more individuals to be involved and help others live life to the fullest.  Let’s live the dream together and raise awareness about psoriasis and psoriatic arthritis.   Let’s put an end to the misconceptions about our disease.  Let’s fight for a cure along side our mothership the National Psoriasis Foundation.  Let’s Walk, Ride, Run, Cycle, and even Bingo for a cure.

Pso many friendships are being made from events like these.  Pso what are you waiting for, join the National Psoriasis Foundation today.  Together we can make a difference.  

OCTOBER 29TH IS WORLD PSORIASIS DAY.   Happy World Psoriasis Day to all the friends I’ve met over the years.  Each one of you has touched my heart in one way or another.  God Bless you and your families.  

The NPF is going to being celebrating their 50th Birthday in 2017.  We are celebrating at the Plaza Hotel in NYC. Seats are limited.

Let’s not forgot the Volunteer Conference scheduled to happen in 2017. I hope you’re making your plans to attend.  Wait your not a volunteer,  no problem come anyway.  I’ve been to four of these events and they are top notch. Plan your attendance with the National Psoriasis Foundation.  I’ll see you there. 

If you sign up today you will get a free house breaking wee wee pad.  Remember to have your pet spade or neutered.   

#psoriasis #psoriaticarthritis #psa #NPF #chroniclife #spoonie #creekyjoints #Leo #enstilar #worldpsoriasisday

 

Eli Lilly’s Taltz proves best in show for Palmoplanter Psoriasis sufferers 

​Very impressive results for this fairly new drug named Taltz.  For most patients, hand and foot psoriasis can be very frustrating.  Nothing seems to work for these areas.  I know of three medications that are somewhat effective.  

However, Taltz is taking no prisoners when it comes to palmoplanter psoriasis which affects the hands a soles of the feet.  According to the research, during the 12 week study, 50% of patients cleared 100% (PPASI score).  

As a patient Influencer I’m happy to report this information to the psoriasis community.  It breaks my heart to see people suffering in this capacity.  I feel their pain, because I’ve experienced it.  
The best news is that it has a track record for maintaining it’s effectiveness for 60 consecutive weeks.  This is pivotal for people with palmoplanter psoriasis.   Dr. Mentor is a specialist when it comes to all types of psoriasis.  

If you’re newly diagnosed join our support group call Overcoming Psoriasis <<click on hyper-link
The recommended dosing for Taltz is an initial 160 milligrams (mg) subcutaneous (SC) injection followed by an 80mg SC injection once every two weeks for 12 weeks, then 80mg every four weeks. Taltz is a little more convenient then other anti-IL-17A medications for psoriasis.

Dr. Menter’s article is in the link provided.

Taltz (ixekizumab) Can Improve Palmoplantar Psoriasis For Up To 60 Weeks

#palmoplanter #Taltz #Lilly #psoriasis #psoriaticarthritis #NPF 

“GUS” the next big thing in the Psoriatic community.

Promising new medication is waiting FDA approval.  This will be Janssen’s second interleukin blocker for psoriasis.  Janssen’s first medication Stelara was well received by the psoriasis community years ago when it was first introduced.  Stelara was later approved for psoriatic arthritis.  I’ve heard it may even be indicated for Crohn’s disease in the near future.  
My experience with Stelara went extremely well. I was very pleased that my skin and joints responded so well for years.  My quality of life went from terrible to terrific with just a few doses of Stelara.  This medication blocks the molecules responsible for the debilitating inflammation that is visible on the skin and chronically painful in the joints.  
This new medication called GUS for now until it is officially named, targets only one part of the immune system, different from its predecessor which targets IL-12 and IL-23.  GUS is proving to be more safe and effective then Humira which has been a long time favorite for the psoriasis community.  Patients need choices when it comes to medications for this insidious disease.  These medications work in the body until pso/psa flares again causes the patient to seek new treatment.  GUS will be the next step in treatment for many.  
I’m very thankful medications like these have become available for me and others like me.  Unless you live with this disease I think it’s hard to understand how devastating pso/psa can be.  When you add the fact that it’s visible, painful, chronic, itchly, flakey, embarrassing, messy, requires many hours of care each day, causes fatigue, life threatening comorbidities, people like me get excited when we learn about new medications like GUS.  Here is a article comparing GUS to a well known biological medication Humira. 

https://www.psoriasis.org/advance/trial-drug-clears-psoriasis-better-than-humira
#psoriasis #psoriaticarthritis #psa #NPF #chroniclife #spoonie #creekyjoints #GetYourSkinOut #tonic #HealtheVoices #Janssen #Stelara #Gus 
http://www.prnewswire.com/news-releases/new-phase-3-data-show-significant-efficacy-versus-placebo-and-superiority-of-guselkumab-versus-humira-in-treatment-of-moderate-to-severe-plaque-psoriasis-300337400.html

Watch “Psoriatic Arthritis Awareness Day” on YouTube

Happy Psoriatic Arthritis Awareness Day. September 28th is now declared an awareness day dedicated to PSA.  Celgene along with the National Psoriasis Foundation have partnered to raise awareness about this often misdiagnosed disease that can cause serious consequences if left untreated.  Early diagnosis is key to preventing irreversible damage to the joints.
If you are experiencing fatigue, swelling, stiffness, nail pitting, pain in the lower back, neck or ankles, trouble with flexibility or movement, see your doctor!  Listen to Dr. Feldman and Christina in the audio interview to gain insight and educate yourself about this debilitating disease.  Thank you for your support and “share” if you care. 

(click here for the audio interview )

#patientfirst #psoriasis #psoriaticarthritis #NPF #chroniclife #spoonie #creekyjoints #Celgene #arthritis #RA #AF #ArthritisFoundation

Olympic Swimmer 12x medalist with Psoriasis 

Dara Grace Torres (born April 15, 1967) is an American former competitive swimmer who is a twelve-time Olympic medalist and former world record-holder in three events. Torres is the first swimmer to represent the United States in five Olympic Games (1984, 1988, 1992, 2000 and 2008), and, at age 41, the oldest swimmer to earn a place on the U.S. Olympic team. At the 2008 Summer Olympics, she competed in the 50-meter freestyle, 4×100-meter medley relay, and 4×100-meter freestyle relay, and won silver medals in all three events.

Torres has won twelve Olympic medals (four gold, four silver, four bronze), one of three women with the most Olympic women’s swimming medals. She won five medals at the 2000 Summer Olympics when, at age 33, she was the oldest member of the 2000 U.S. Olympic Swim Team. She has also won at least one medal in each of the five Olympics in which she has competed, making her one of only a handful of Olympians to earn medals in five different Games.

What they didn’t tell you is that Dara Torres did this all and she has Psoriasis.  Each day she trained wearing her bathing suit as a business suit.  She was subjected to the stares and comments like all of us in the psoriasis community, yet she found the courage to ignore it all and reach for the stars.  Her accomplishments are super human.  She truly is a Psoriatic Psuperhero.  Dara is also the author of two best selling books.  She is incredibly gifted and talented.

Over the years she spoke about her psoriasis and the challenges.  On August 18th she step it up a notch by sharing it on TV.  Celgene launched a campaign #ShowMoreOfYou and their website Show More Of You.(click on the highlighted text)  Dara is the spokesperson for the campaign.  I was lucky enough to interview her.  I thought it went well.    

https://youtu.be/69r9YcxUTqg <<<click the link for the interview 
I was very excited to even be selected to speak with a Olympic Gold Medalist.  I’m so thankful she is helping us raise awareness and to encourage others to accomplish their dreams despite psoriasis and psoriatic arthritis.  Our mission is still hard pressed for a cure.  Thankfully we have really good medications to fall back upon along the way.  Thank you to everyone who made this possible.   
If you would like to sponsor our team Overcoming Psoriasis for our Walk here is the link>  Www.teamnpf.org/nycwalk All donations are greatly appreciated.  
#Celgene #Otezla #spoonie #creekyjoints #GetYourSkinOut #PsAM16