June 8 Itching for a Cure walk in New Jersey: it's not about you

The National Eczema Association recently announced the second annual Itching for a Cure walk, which will raise awareness and funds for eczema outreach and research. It will take place June 8 on the Monmouth University campus in New Jersey--essentially greater New York City. (Last year's walk was held in Asheville, North Carolina.)

The largest barrier for me, as an adult patient, to participating in such a walk--were one to be held in the area I live in--is embarrassment. Eczema is not a socially acceptable disease. It's there on your skin, sometimes your face, where people can see there's something wrong with you. And when it's not visible, that's a good thing. You want to hide it.

In this matter, there's a huge difference between a parent of a child with eczema and an adult patient with eczema. The mother or father of a child with eczema is not embarrassed. They are concerned and want to do everything they can to make their child better.

On top of the embarrassment factor, it seems a bit selfish, a bit like a panhandler, for an adult patient to take part in an eczema walk. Sponsor me, it seems to say, to raise money for a cure for me!

Mothers and fathers are ready to fight for their kids. They are not doing it for themselves. They will proudly take part in an eczema walk, and look you in the eye.

The absence of adult patients from Itching for a Cure is probably not a major factor. After all, eczema is predominantly a condition that children outgrow. But how might we convince adult patients, including me, to take part?

I think the key lies in altruism. It's not about you.

Let's face it--if you're raising money to increase awareness of the prevalence of eczema, or how it should be properly treated, or to fund research that might lead to a pharmaceutical cure--you are not doing it for yourself. There will be no cure for eczema in your lifetime. You are doing it for other people. Your grandkids, and millions of people you will never know.

It becomes a lot less embarrassing when you're doing it for somebody else.

And that is why if there is ever an Itching for a Cure walk in my area, I'll be signing up. I know exactly how shitty it is to live with this condition, and how important it is that other people be spared the torment and the embarrassment. It's not me I'll be doing it for--it's you!

New NEA blog post. Why is the East Coast missing from the Eczema Map Project?

Check out my latest post on the blog of the National Eczema Association. I write about the Eczema Map Project and, in particular, what it's already taught me: that either I have a lot to learn, or there's not much happening on the east coast of the United States, which has traditionally been the power center for academia, industry, and medicine. Why is that?

New NEA blog post, on repurposed skin barrier drug for eczema

See my new post on the website of the National Eczema Association. It's about researchers at the University of Rochester who are conducting a clinical trial of Actos, a drug originally developed to treat diabetes but which looks like it could also repair the skin barrier and help eczema patients.

I learned about Actos when I spoke to Alice Pentland, who directs the new Skin Barrier Research Consortium at Rochester. I was going to write about the consortium but got too excited about Actos instead. I'll have to cover the research group in a second post.

The National Eczema Association launches a blog

The National Eczema Association has launched a blog on their website. I was honored to be asked to write the first post. "Well-moisturized infants less likely to develop eczema" is a summary of Eric Simpson and Hywel Williams' ongoing study of how moisturizing newborns provides them with barrier protection that can delay or maybe even prevent eczema from developing.

More posts are in the pipeline from other sources. The NEA expects that the blog will eventually feature the work of many different bloggers, including active scientists and clinicians as well as science writers. I look forward to discovering an ever-expanding community blogging eczema research, therapy, and coping strategies for parents and patients.

Voov and I make a pilgrimage to NEA headquarters

Look for my blog posts to appear regularly, if sparsely, on the website of the US's National Eczema Association starting soon. That was the upshot of a trip I took today with my 3-year-old daughter Voov to meet the NEA's CEO Julie Block at the organization's headquarters in San Rafael, California--which is only a 20-minute drive from where I live. Isn't it convenient!

Voov, Spanish Key (in disguise w/ late-phase Miles Davis wig), and a concerned-looking Julie Block, CEO of the National Eczema Association, at the nonprofit's HQ in San Rafael. Like the logo on the door? It's part of the NEA's recent rebranding effort.

About two years ago, when I was starting this blog, I talked to Julie and NEA communications director Diane Dunn about how we might be able to partner. I work at a dynamic bioscience campus in San Francisco, and I was hoping Julie and Diane might come down for a tour, to see how eczema therapies might be commercialized; but it wasn't happening. And if the mountain won't come to Mohammed, Mohammed must go to the mountain. Opportunity arose this week when I had to stay home on Friday to look after Voov.

Voov inherited my genes for eczema. She gets it on her hands--red, crusty inflammation and cracks that won't heal. But she's good-spirited. During today's summit she entertained herself with Julie's collection of binder clips and colored markers, and afterward sang "Jingle Bells" most of the way home.

Julie and I had a great two-hour conversation about eczema science writing, blogging, social media, and nonprofit fundraising. We agreed that eczema is covered only very shallowly in the mass media, despite 20% of children being affected and 2-3% of adults. There's a need for information about causes and treatment. Likewise, the blogosphere has very few voices covering eczema. On the web in general, overly commercial sites touting treatments of dubious worth tend to dominate. By contrast, the NEA provides a credible forum on its website where patients and parents can go to get scientifically valid information about eczema. Julie is particularly proud of the NEA's Facebook page, which enables them to engage almost in real-time with the community; she's happy, though, that a number of more conservative (not in the political sense) users tamp down the emotion and opinions that eczema can churn up.

Supporting basic and applied eczema research is a priority for the NEA, which offers a limited number of grants at the smaller end of the spectrum (around $100k). Julie points out that winning such grants, from a patient advocacy organization, can make a scientist's application for larger grants much more attractive to the NIH. In my day job, I also see the effect that "smaller" grants can have if given at the crucial precommercial stage where a scientist is doing experiments to validate research before spinning off a company. It's with the broad goal of raising donations for the NEA to fund research that I'm going to be writing blog posts for the NEA website (probably every month or two). As I do on this blog, I'll be covering recent advances in the field, showing that the field is active: steroids, Protopic, and Elidel are not the best that science can do for eczema patients. Things will get better in the future, and it's up to people like us to make it happen sooner rather than later.

(What's up with that wig in the photo? The NEA shares office space with the National Alopecia Areata Foundation, which has a surplus of wigs generously donated by Revlon. I'm balding and wanted to feel, just for a moment, what it was like to have a glorious head of hair.)

Easy way to make yourself feel better: read WebMD

I just did something I shouldn't have-- but the result was, from my selfish perspective, good. Like probably 25,000 other people I got the National Eczema Association's email newsletter today. It says that CEO Julie Block is a guest expert on WebMD. Join the discussion, it said. I clicked on the link. Good Lord. Should you ever despair about your eczema, you can click on that link to instantly confirm that there are people out there doing far worse than you. Someone apparently has cactus infiltrating their entire body, pushing needles out their fingernails and reproductive organs. And then there's the tree man.

So one news item in the NEA newsletter is that the National Jewish Health Center in Denver won a $31.5 million grant to study MRSA infections in patients with eczema. This grant was awarded in July, but I broke the story two days ago. NEA, consider yourself scooped!

This in jest. There's a difference between being a blogger on your own schedule beholden to no-one and trying to get a respectable newsletter out on deadline. The NEA's newsletter and magazine are valuable resources for people like me.

I wrote to Diane Dunn, the NEA's communications and program manager, to introduce myself, and she decided to treat the anonymous internet weirdo with kid gloves. She wrote back suggesting there may be a way for us to work together. I sincerely hope so. There aren't many places you can go to to get news about eczema research. The mainstream media tends only to cover stories about dogs (this happens to be a general rule in science writing) or stories with an angle like people with eczema are "allergic to money" because there is some correlation of atopic dermatitis with higher income. Eczema is complex enough that there are results coming out of labs and clinics all the time that may pertain to your individual case. I hope to relay some of these stories.

I wrote to Adam Dormuth at National Jewish to ask him if he could give me details on the Atopic Dermatitis Research Network, a consortium of ten academic centers that was created specifically for the purpose of winning the grant, which was advertised by the NIH in a competition. If someone told me there was $31.5 million to be had, I'd call all my professor friends and get the band back together too. Anyway, haven't heard back from Mr./Dr. Dormuth. The man may prioritize his inbox the same way I do, which is

1) requests from people who really matter, like donors, politicians, ambassadors, and Newsweek  reporters

2) requests from people who matter, like faculty who have a paper coming out next week that the public affairs department doesn't have the bandwidth to write about

3) announcements about campus events featuring free food

4) spam

5) requests from anonymous bloggers

I've just wasted ten minutes trying to think of a witty ending for this post. And failing. In short: we'll get some answers about ADRN, whether it's from National Jewish or elsewhere.