The National Psoriasis Foundation is celebrating its history and shining a light on things to come with its inaugural Founders’ Week. During the week of February 16, 2020, we will be looking back at our humble roots that started with a small newspaper classified ad for those wanting to connect with others living with psoriatic disease in 1966 and how it led to the organization we are today.
On Tuesday, February 18, it’s all about giving thanks to the tireless efforts of talented researchers who have helped to improve the lives of millions living with psoriasis and psoriatic arthritis (PsA) with improved treatment options and more knowledge about the disease. Your financial support has enabled our past success, and will enable an even brighter future. Through your donations, we were able to award $2.8 million in research grants in the 2019 fiscal year – which brings our overall historic total to more than $21 million. We have bigger plans for this year and need your help!
Formulating a Plan
The amount of research funded in 2019 set an organizational record and has helped to kick-start our current strategic plan. Within the research goal, there are several objectives:
- Reduce to zero the burden of psoriasis.
- Reduce by 50 percent the time from when individuals living with psoriasis first exhibit symptoms of psoriatic arthritis until their diagnosis and develop a diagnostic test for psoriatic arthritis.
- Establish a multi-institution, multi-disciplinary research team with the aim of identifying an intervention that will prevent the onset of psoriatic disease.
- Improve by two years the lifespan of individuals living with psoriatic disease and improve by 50 percent the quality of life of individuals with psoriatic disease.
The goals are ambitious. But we know, with your support, we can reduce the burden of psoriasis, improve the time it takes to diagnose PsA (leading to faster and more effective treatment intervention) and look for ways to prevent the onset of psoriatic disease and related conditions.
Since NPF’s inception, we have been motivated by our community who live with psoriatic disease on a daily basis. Just as our past was built on the needs of those living with psoriasis and PsA, so has our current strategic plan been born from your stories and struggles living with the disease.
Putting the Plan Into Action
Along with our traditional grants that focus on supporting researchers, from early career professionals to multi-team initiatives, we are excited to share with you this Founders’ Week three specific grants that will aid us in reaching our strategic plan goals, and those in the NPF community who will be directly affected by it.
The PsA Diagnosis Project
We know that around 30 percent of those diagnosed with psoriasis will develop PsA. The problem is that medical professionals have not had a reliable diagnostic test to catch the disease early on, leaving many to live with pain and discomfort until a proper diagnosis can be given.
Jody Quinn knows this all too well. She lived 15 years not knowing where her joint pain was coming from, and not finding the answers from the numerous medical professionals she saw. It wasn’t until she met the right rheumatologist years later that a name could be put to her pain, and proper treatment could begin.
The PsA Diagnosis Project was created with those like Quinn in mind. The quicker the disease can be diagnosed, the timelier treatment can begin to help avoid permanent joint damage and other complications. NPF has kicked off the first round of funding for a handful of promising proof of concept research proposals and is confident that we are on the road to that all-important testing tool.
“It is vital that there is a diagnostic test developed for psoriatic arthritis,” says Quinn. “As in my case, it would prevent years of unnecessary suffering, joint and tendon pain and irreversible joint damage.”
The Psoriasis Prevention Initiative
Also new for this year is the Psoriasis Prevention Initiative (PPI), which aims to invest $6.5 million to prevent the onset of psoriatic disease, relapse and related comorbidities. The plan is to have this accomplished by establishing a collaborative effort, funding a multi-institution, multi-disciplinary research team. The idea is that the problems associated with psoriatic disease need experts from across the board – not just rheumatologists and dermatologists.
Being a parent of a child living with psoriasis can be hard. Not only do you have to watch your son or daughter live in a world where their disease is visible to their classmates but you have to live with the feeling of helplessness of watching them go through life with something that has no cure.
As a father of a child who was diagnosed with psoriasis at the age of 6, Derek Schujahn, from Franklin, Tennessee, has watched his son deal with the isolation and the struggles of jumping from treatment to treatment. “As a dad, you reach a point where you feel completely helpless,” says Schujahn.
Preventing psoriasis from ever starting will help families just like the Schujahns.