Today we feature an interview with Julie Block, President and CEO of the National Eczema Association (NEA). Over the past 5 years, Julie has been leading NEA’s mission to support and educate patients, and promote scientific progress in the fight against eczema.
The National Eczema Association (NEA) is the premier patient-oriented eczema association in the United States. Can you share with us how NEA started?
Originally the organization was called the National Eczema Association for Science & Education (NEASE) and was formed in 1988 in Portland Oregon. Dr. Jon Hanifin, a preeminent dermatologist and eczema researcher, knew that his patients battling this chronic condition needed more support and information. He, along with Nurse Practitioner Susan Tofte and patient Irene Crosby started a patient support group, and the rest is history as they say. The association moved its headquarters to California in the early 2000’s, and has been on a solid trajectory providing eczema education, support and funding research, ever since.
What is the mission of the NEA?
NEA improves the health and quality of life for individuals with eczema through research, support, and education.
How did you become President and CEO of the NEA?
I have devoted my career to non-profit leadership and am privileged to serve NEA now.
How have you seen NEA grow over the past 5 years as leader of the NEA?
NEA continues to educate and support more and more eczema sufferers and their loved ones each year. As well, we have funded close to $500,000 in eczema research. One of the biggest changes has been communication through social media channels, as you can imagine. NEA has increasingly engaged in advocacy efforts – for example, ensuring access to phototherapy, and for increased federal research funding to NIH. Our outreach to physicians has been ongoing during this time to provide eczema resources that improve their patients lives.
Support, awareness and education are very important for patients and families with eczema. What is the biggest piece of advice you have for our readers without eczema in how they can support patients and families with eczema?
Great question! Don’t tell anyone “Stop Scratching”…its near impossible and just makes the person with eczema feel bad.
How can readers get involved with the NEA locally or nationally?
Your readers can get involved in a host of ways: participate in a local Itching for a Cure Walk! Create a team, fundraise, and join the entire eczema community across the nation in either a virtual walk or the national walk being conducted that year. We always are in need of magazine article submissions, and website content that is personal. Start a local support group with an eczema patient and or caregivers – its easy! Clinicians and researchers will have an increasing opportunity to get involved in NEA advocacy to improve eczema care and assure access and affordability. Stay tuned.
Over the years, NEA’s support of scientific research has been critical for advancing our understanding and treatment of eczema. Can you share some of the most exciting findings of these projects that NEA has supported?
Two specific NEA seed funding projects come to mind. First, Dr. Eric Simpson of OHSU studied eczema prevention in high risk infants. This research grant was parlayed into an international effort to study the same, and was awarded NIH funding. Secondly, Dr. Gil Yosipovitch received two research grants from NEA on itch, specifically Pruritus in Atopic Dermatitis using Arterial Spin Labeling Functional MRI and The Effect of Visual Stimuli on Itch Perception Intensity in Healthy and Atopic Dermatitis Patients. These projects too led to NIH research grant funding and have contributed greatly to the body of research knowledge on the underserved study of itch.
So much work remains to be done in eczema. What exciting projects is the NEA currently supporting and what endeavors will NEA be undertaking in the coming years?
Now, for the first time in decades, there is a healthy pipeline of new eczema drugs in development, including the first biologic drug for eczema. All this development will bring profound change for eczema atients. It will also bring misconceptions and bewilderment as patients, payers, medical practices, government and medical academia all scramble to understand eczema’s changing healthcare landscape as it retains to their respective needs. NEA wlll soon launch a Roadmap to Advocacy to usher in this Decade of Eczema. The roadmap is a blueprint for change, a vision that will propel NEA into a leadership role in this new era of transformative care.