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.
Today, we feature an interview with Laura Veralla de Bertotto (LVB), CEO of VMV Hypoallergenics, and her mother Dr. Verallo-Rowell (Dr. VR), a dermatologist and dermatopathologist who helped found the company with her husband. VMV Hypoallergenics was found in 1979 to provide hypoallergenic skin care products.
How did you decide to start VMV Hypoallergenics?
LVB: My mom started it basically because she had so many patients who needed options and it was her research interest. She trained under doctors who really believed in patch testing, and she saw an increasing number of patients with contact allergies and acne. She also had trouble finding options for them without allergens and began making formulations without them. My father was a patient with adult acne which she cleared and, after they were married, urged her to sell them commercially. She balked at the idea of promoting a commercial brand (we still have to send her med reps 🙂 so the compromise was: she would remain the “cook” (formulating and publishing papers based on her research) and he would handle the business, but couldn’t use her name (she agreed to “VMV,” her initials).
What is the mission behind VMV Hypoallergenics?
LVB: The safest, most proven effective care on the planet.
At the time that my mom started, there wasn’t a lot of understanding of hypoallergenicity. There still isn’t all that much regulation for the term. She created the VH-Rating System which is like an SPF rating for skin safety: the higher the rating, the more allergens are NOT in the formulation. It was the first of its kind, is still the only such rating system of its kind and is published in one of the leading contact dermatitis journals. And it’s objective, based on published allergen lists from leading organizations who regularly do patch tests on thousands of patients.
In addition to safety, she wanted efficacy (she’s a dermatologist-dermatopathologist, after all, and handles hospitalized patients…so efficacy is a must). From our earliest days, we backed our claims with evidence-based clinical studies (randomized, double-blind) and she published many of them in peer-reviewed medical journals.
That’s pretty much the heart and soul of all that we do.
How has VMV Hypoallergenics evolved over time?
LVB: Her patients and our clients have “forced” us to evolve 🙂 She saw an increase in peri-oral dermatitis, we made a toothpaste for it. We saw an increase in rosacea needs and there not being a hypoallergenic option, we made a line for it. Her research showed melasma due to visible light exposure from indoor light…we made an indoor-outdoor sun and light screen for daily use. And our own family’s needs have shaped how we’ve grown. When I was pregnant, I didn’t see any fragrance- and allergen-free options…considering our genes (I’m fragrance-allergic and had acne; my husband has rosacea and seborrheic dermatitis; my sister is a walking sneeze 🙂 I begged my mom for a baby line. And it’s turned out to be so helpful to other parents with kids with sensitive skin.
We started with a very simple regimen then grew to offer over 300 SKUs for men, women and children of all ages, from skincare to hair-bath-body care, makeup and more.
How have you brought your knowledge as a dermatologist and dermatopathologist to the company?
LVB: My mom is the consummate researcher. She STILL sleeps at crazy hours, nose deep in a journal or eyes stuck to the laptop screen…still researching, researching, reading, reading, writing, writing. What she reads, what her patients show her, how they react to her formulations…all this goes into our products.
The nice thing, too, is that as a dermatopathologist, she has such a strong understanding of skin CELLS and diseases. This may sound like overkill for cosmetics but it has given us a far better understanding of why, for example, virgin coconut oil is so effective (its fatty acids are native to skin; it improves the balance of cell walls; it provides barrier repair and anti-microbial action) than simply reading a supplier’s documentation.
As a dermatologist who’s both a researcher and a clinician, she gets to see a tremendous amount of patients and explore innovative treatments with them. We benefit from this greatly…and when we put a formulation into production, so do the patients.
And, from its inception, she’s published her research, which has gone into new formulations, then products, which then helps to fund more research, etc. in a wonderful cycle.
DR. VR: It’s interesting because I never think of myself as the company. I see patients and think of new formulations based on their needs and my research. Almost everything starts as a formulation in our pharmacy and clinical studies. If we see something really helpful to patients, I’ll mention that it address certain needs and then the kids take it from there. I don’t get involved in the commercial aspect of it. It’s been a great experience in terms of innovative treatments because I really get to try new things that excite me and see wonderful results with my patients.
Can you share some success stories?
– Earlier this year, we had a mom contact us because her 4 year old son was diagnosed with contact dermatitis but had misdiagnosed twice before he had a patch test (and because his back was too small, he had to have it done twice!). He had been prescribed steroids, but he turned out to be allergic to it. He was miserable — his mom was sleeping with him at night because he was so itchy all the time he would scratch in his sleep until he bled. We started him with a 7-day skin fast, where he used minimal products, and then he began using our Boo Boo Balm on the ‘rashy’ areas. It worked — it calmed his skin down significantly, so much so that his mom asked if we could get a custom tub for him since they were using so much! His skin is so much better now, using the Essence Bath/Body products for prevention.
– We had another mom reach out to us because her daughter had curly, hard-to-tame hair, but every shampoo and conditioner she used caused contact dermatitis around her neck, and seborrheic dermatitis on her scalp. She also started with a 7-day skin fast, and then was able to use the Essence Clark Wash and Conditioner. The conditioner is a godsend because it means post-bath time is a much easier time for mom and daughter!
– A wonderful customer of ours wrote in to say how she couldn’t use a shampoo for 20 years before finding ours.
– We have a customer with chronic discoid and subacute cutaneous lupus erythematosus who wrote us a very heartfelt letter because she can finally stop wearing gloves and hats (Armada 70 sunscreen protects her perfectly).
There are many, many we can share, from psoriasis management to acne, hyperpigmentation and more 🙂
What new developments are on the horizon?
LVB: We’re making allergen-free options in kid’s makeup and face paint, our laundry detergent, US monograph sunscreens, and several more in the pipeline.