When I started my blog in 2013, I had no idea the opportunities that would follow. Primarily, to get my story out there, and to connect with others going through similar situations — I started it as part of my own personal prescription to heal my body.
I specifically remember the Summer of 2014, when I received a direct message on Twitter from the National Psoriasis Foundation. They were looking for bloggers, within in the psoriatic disease space, and had come across my blog.
Up to that point, I had done work with the Arthritis Foundation, but hadn’t realized the benefits of the NPF as they weren’t huge within my local area of Pittsburgh.
Of course, I was interested in helping and began to participate in events with them.
The first event that I did with the NPF was to attend a blogging summit held by a large pharmaceutical company in New York City. The company manufactures a biologic that many psoriatic disease patients take, and held the event to gain feedback from within the community. It was the first time someone in the healthcare industry was looking to me to provide insight into what my psoriasis community was talking about and what we needed.
It was a really exciting experience and provided me with the opportunity to meet other psoriatic-arthritis and psoriasis bloggers. Todd Bello, Sabrina Skiles, and [Brittany Ineson] were a few of the bloggers at that event.
I remember sitting next to my window in New York, looking out over the Hudson River thinking: “Wow. This is so awesome! I’m sitting here, using my experiences for good and having so much fun doing it. I wonder what else I can do?”
From that event forward, I started looking for more and more opportunities to get involved. The more I looked, the more I realized what an amazing organization the National Psoriasis Foundation is. It’s a foundation that any psoriatic arthritis or psoriasis patient, caregiver and/or advocate should get involved with.
I’ve had many wonderful experiences with the NPF, but here are my top three moments and why they were so impactful:
1) National Psoriasis Foundation D.C. fly-in
I’ve had the opportunity to attend several NPF D.C. fly-ins over the past few years. The one that sticks in my mind is the very first one I attended. And guess what? There was a blizzard that day in Washington, D.C., and we didn’t even make it to the Hill to advocate.
So, what made it so special? The people that the NPF had there.
We ended up being stranded at a hotel in Alexandria, Va., for a day. At first I was bummed! We had traveled all that way to advocate to our legislators, but due to the weather, we were relinquished to a ballroom at a Kimpton hotel.
Slowly but surely, I realized that this was an amazing opportunity.
The NPF not only brought patients and advocates to the Hill, they also flew in top researches and doctors in the field. We ended up having the day to pick the brains of these top medical professionals. I tried to absorb every little bit of information they could provide.
I was in the same room as top researchers working on finding the mechanism behind our disease. To be able to learn right from researches how biologics worked, and how they differed from each other, was mind-blowing. I didn’t know there were such passionate individuals out there looking for a cause. And to be face-to-face with them was invaluable.
Because of the NPF, I was given the opportunity to learn first-hand from the leaders on the forefront of psoriatic research and care, and, to me, that was nothing short of amazing.
2) National Psoriasis Foundation Volunteer Conference
The NPF hosts a bi-annual National Volunteer Conference, and in 2015 it was held in San Francisco. This was the first time in my whole life when I was surrounded with hundreds of individuals who understood exactly what I was going through.
I met so many inspiring advocates who are out there raising awareness, helping to bring about change, and thriving with psoriatic disease.
The content at the conference was fantastic! But, my favorite part of it all was connecting with so many other patients, caregivers, advocates, healthcare professionals, scientists, pharmaceutical and medical companies, and more. It gave me the opportunity to not only expand my knowledge on the disease, but expand my inner circle of friends living with the disease.
With psoriatic disease, it’s so important to have a support system. And this conference helped bring together many more people add to my support team!
3) National Psoriasis community
And speaking of that inner circle, the 100-percent best thing the NPF has allowed me to do is to find friends who have become like brothers and sisters to me. We even call ourselves the #PsoFamily and refer to each other as #psis or #pbro.
It’s amazing to interact with other advocates who are out there fighting the same fight.
We’ve received many opportunities to meet up and participate in events through the NPF, but we’ve also developed a friendship where we do other events as well. I’m so grateful for these family members as they help living day to day with my condition so much easier. They’re always a phone call, text, or tweet away.
If I never would have been sought after by the NPF a few years ago, who knows if they’d be in my life? But they are now and I’m so thankful.
My intent in sharing these experiences with you is to help show what a tremendous organization the National Psoriasis Foundation is. I sincerely urge you to get involved.
There are many resources you can check out. Here are a few to start with:
The National Psoriasis One to One Program — You can sign up to be a mentor or a mentee. This match-maker program connects patients with others who can give advice based on their own personal experience. I started as a mentor and have had fantastic mentees over the years!
The National Psoriasis Blog — The blog is a wealth of knowledge that you should subscribe to. Make sure to stay up-to-date on the latest research, trends, and news. You’ll see articles written by psoriatic disease patients, leading medical professionals, and more!
Talk Psoriasis Support Community — These discussion boards are great to get questions answered by other psoriatic disease patients. Log on and learn from others just like you!
The NPF offers many other resources as well. Use these three as a springboard!
I’m very grateful to have this organization on our side as we work toward a cure together.