Each year the National Psoriasis Foundation (NPF) holds a reception during the annual American Academy of Dermatology (AAD) meeting to say “Thank You” to our partners in attendance. NPF welcomes this opportunity to gather with those who have transformed health outcomes for individuals living with psoriatic disease and to recognize how far we have come together.
As we closed the evening, NPF Board Member Jonathan Ray Scott, shared his journey with psoriatic disease – an impassioned perspective on why he is grateful for living with psoriasis. His powerful take on finding community and being of service to others in their journey to better health are sentiments NPF President and CEO Leah M. Howard, J.D. and the NPF team share with Jonathan. Below are Howard’s full remarks planned for the evening.
Good evening. Thank you again for joining us this evening and for the partnership and collaboration we have had over the last year.
A year ago, I stood before many of you in a similar room in Boston during AAD and spoke of the bright future of NPF. In the year since, we’ve made incredible progress – reaching more people than ever before through our Patient Navigation Center, connecting with more teens and children than at any time in our history, and working with our partners and supporters to take crucial steps forward in our drive toward prevention, remission, and a cure for all.
But I know it’s not all good news for many of us right now. There are many forces at play that are making it difficult on industry partners, health care providers, and people like me who live with a chronic disease.
There is a great deal of uncertainly, stress, frustration, and loss as economic and marketplace pressures shake us to our core and complicate our work.
I’m here to tell you, with a great deal of certainty, that we will come through this by sticking together.
The NPF community is 56 years old, and we have seen challenges. Our founder had nowhere to turn for community or for information, so she built it herself. And the bonds formed between people sharing the trials and tribulations of a chronic, systemic disease are nearly indestructible.
Beverly created community where before there was only isolation. Then she worked for decades to growth that community into the nationwide organization we represent today.
I consider myself a steward of Beverly’s work – entrusted to carry the mission forward and face the challenges of our time, much as she did hers. I know I am not alone while I am at the helm. I am supported not only by many of the people here tonight, but also by so many who have come before me.
This community and our achievements are the results of the collective contributions of thousands of individuals over more than half a century.
No challenge before us stands a chance when we act as a community and work in the best interest of people living with psoriasis and psoriatic arthritis. Nothing can get in our way.
A week ago, I found myself thinking about our founder and all those who have shaped today’s NPF as I listened to the stories of our volunteers and staff during our annual Capitol Hill Day and our IMPACT Volunteer Summit.
There is still far too much burden placed on and shared by people with this disease – 9.7 percent of people living with psoriasis have reported suicidal ideation, and anxiety and depression impact as many as 1 in 3 in this community.
We know that not nearly enough people truly understand the impacts of their disease. Far too few treat their disease at the appropriate level, and of course we know that not enough people persist in treatment once the visible signs of disease are gone.
But in that room last week – seeing and hearing about how far each person has come and thinking about how this community has progressed for more than 5 decades, the problems before us felt solvable. Seeing how far people can come gives me confidence about how we’ll handle the future.
One of our speakers this weekend was JoAnna. She was only six years old when psoriasis entered her life, and her journey was incredibly challenging.
JoJo was an outstanding swimmer, and for most kids a few hours in the pool each evening would be a great escape from the troubles of daily life. But psoriasis stole that peace from her for a long time.
Her bathing suit gave her nowhere to hide her plaques, which had spread to a large portion of her body, but being in the water was also her superpower.
She faced intense bullying that still brings a tear to her eye today as she talked about it. It was a refrain we heard again and again from all those who lived with psoriasis at a young age. In each case, the decades since the abuse have still not been enough time to fully heal.
JoAnna and her mother found NPF, and when they did, they gained access to the info they needed to find the right provider and treatment. Most importantly, they found peer support and connection from others who understand their unique experiences.
JoJo found her treatment, and she stuck to it. She recently completed college at a division 1 school as a varsity swimmer, and soon she’ll be getting married. When she dons her wedding dress, she’ll likely be completely clear of the visible impacts of this disease that used to haunt her life.
Today, one of her biggest concerns what she calls “survivor’s guilt.” She found relief, which only makes her think more of those who are still struggling. Now she provides support and expertise to all those who need to hear her story.
After the events of last week, JoAnna shared her message with the community:
“Have hope,” she said. “Life can be normal. There are a lot of others who have experienced what you’re going through. It’s a very isolating disease when you’re first diagnosed, but know that there is a lot of help out there for you.”
We won’t fix all our challenges today or tomorrow. And as soon as this all passes there will be new hurdles before us. But when you see the power, resilience, and persistence of this community in person, you can’t help but feel like we’ll be OK. Together, we will come through this.
To all those feeling uncertainty or fear or anxiety about our present and future, I offer NPF and the incredible people of this community as an example of our potential to triumph.
We have been navigating challenges together for 56 years. We can do this, together.
As we begin the essential process of crafting our next 5-year strategic plan, we look forward to hearing from many of you about what gaps and opportunities you see in the push to improve health outcomes for our community as we strive toward a cure.
The strategic plan is a roadmap that guides our progress toward our mission. We aim to make this next strategic plan our biggest and boldest in NPF history. And we know that in order to overcome the challenges before us – those we already know about and those that will surface – we’re going to have to take each step of this journey, together.
Thank you for being a valued member of this vibrant community.