The NEA should join Faster Cures nonprofit group

Unless you live under a rock, you’ve probably heard of the Michael J. Fox Foundation for Parkinson’s Research. Fox, the "Back to the Future" etc. megastar who developed early onset Parkinson’s disease, created the foundation to back research leading to a cure.

The Michael J. Fox Foundation is only one of many members of The Research Acceleration and Innovation Network (TRAIN). TRAIN is a child of Faster Cures, the nonprofit patient advocacy organization based in Washington, DC.

Look at the list of TRAIN member organizations. Isn’t it amazing how many diseases there are for which we need scientists and entrepreneurs to develop cures?  But I don’t see the National Eczema Association on the list. I think the NEA should join TRAIN.

Although most of the diseases represented on the member list are terminal or degenerative, and eczema is neither, those of us who suffer from it can attest that it seriously affects, and in the worst cases ruins, our quality of life.

According to the Faster Cures website,

[TRAIN] was established to create opportunities for medical research innovators to discuss and tackle the challenges that cut across diseases. It is a group of unique nonprofit foundations that fund medical research across a spectrum of diseases, from breast cancer to Parkinson's disease. In many cases TRAIN's member foundations have been created by patients and their families who are frustrated by the slow pace of change in the traditional medical research system. They represent the kind of organizations that are fast becoming the engine behind innovation in disease research--collaborative, mission-driven, strategic in their allocation of resources, and results-oriented. They are organizations that have a singular focus on, and a significant stake in, getting promising therapies from the laboratory bench to the patient's bedside as rapidly as possible.

There’s no reason that I can see that the NEA shouldn’t be part of TRAIN. It looks easy to join. What would it get us? From what I can see, TRAIN provides good models for how to set up sponsored research programs, preclinical and clinical trial templates, agreements for how to share biological samples, etc. I don’t run a patient advocacy organization, so I don’t know firsthand how useful this sort of thing could be, but I imagine that it would be a lot easier to grab a template for a clinical trial than to write one from scratch. 

I read Fox’s biographical book “Always Looking Up,” published in 2009. His optimism is infectious. Read that book. You won’t regret it!

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.)

Quit it with the puns in media stories about eczema

Have you noticed that newspaper editors tend to choose what they think are funny titles for stories about eczema?

The latest that I've seen: "The itchy and scratchy show," courtesy of the Ottawa Citizen.

This annoys me.

Why? Because eczema is no joke to me.

Writers almost always use humor to show disrespect. That's why humor is the weapon of rebels in repressive regimes like the USSR & why those regimes ban books like "The Master and Margarita." But when you're not a rebel, you're a bully. And the victim of the humor has the right to decide the difference.

So some editor at the Ottawa Citizen is dissing me. Us. Is this deliberate?

Nah, he or she is just lazy. The story that follows the title, after all, is serious. But editors need to choose titles that are short, relevant, and grab the attention. That's why they resort to cliches. Lord knows, in my writing and editing career, I have been guilty of doing the same thing.

Cliches call up a whole host of tired, familiar associations, George Orwell said, "like cavalry horses answering the bugle." The itchy and scratchy show. The Simpsons. People with eczema are always scratching! Isn't it funny. Well, not really, but from the editor's perspective, their job is done.

Disrespect, though, means people less likely to take eczema seriously as a medical condition. It's been shown to reduce quality of life as much as diabetes. Would you laugh at someone with diabetes? Would you write "Victory in the bag for colostomy patients"? "Amputees stumped by latest setback"? Maybe, if you work for a British tabloid, but we know how much integrity those people have.

I've decided this is an us-and-them issue. Where is it OK to joke about eczema? Within the patient community, where we have to live with the condition. The National Eczema Association uses a bunch of cringe-worthy puns as titles for their stories and features. And thanks to the Citizen, I myself was inspired to use "the itchy and scratchy show" as an idea for a kid's onesie in a contest Jennifer is having on her blog It's an Itchy Little World. We own eczema, so we've earned the right to choose how we talk about it.

But the media? Odds are, you don't know what it's like to live with eczema. So write serious titles. It works for the New York Times.

Give to the National Eczema Association. I did.

'Tis the season for giving. I just donated $100 to the National Eczema Association. You should too.

If I keep this up for 10,000 years, I'll have reached my goal!

Will we see "itch centers" in the U.S.?

One thing that often gets neglected in articles about eczema is itch. To those of us who suffer from eczema, the itch is virtually the core of the problem. No itch? Then we wouldn't scratch. And we wouldn't have the gashes and tears. Who would care about dry skin or a bit of redness if we could get into bed at night knowing that we wouldn't stay awake, or in a half dream-state, frantically scraping our hands or heads or the backs of our knees or whatever.

Just typing that last sentence, I had two involuntary fits--now three--where my hands leapt of their own accord--now four, five--to my scalp or face and indulged themselves in a frantic scrabble that must seem twitchy and obsessive to a "normal" person.

Chronic itch, it seems, can sensitize our central nervous systems so that very minor stimulation triggers an urge to scratch. Or we just get itchy for no reason at all. The sensors in our skin fire by themselves. But you read articles about eczema that talk about moisturizing and managing your diet as if our rashes appeared by themselves. These articles must be written by people who don't have eczema themselves.

I read today in Skin and Allergy News that the U.S. may in the near future see certain premier medical institutions found centers for itch treatment. Apparently Europe already boasts several such centers, and I interpret the article to say that the centers have a centralized database of tens of thousands of patients. The collected data is being used in studies to determine what triggers itch and how doctors might alleviate it.

One treatment for chronic itch, the story says, is "second-generation antihistamines." Intriguing. I didn't know there was such a thing. All I know is that what must be first-generation antihistamines--Claritin and Allegra--do nothing for me.

The article also mentions "neuroleptic" (read: antipsychotic) meds and drugs that affect the central nervous system. Now, I'm not anti-Western medicine by any means, but the hairs on my neck stood up a little when I read that part closely. If it's a choice between being the slightly weird guy who's always scratching something and being the impotent, lethargic insomniac, I'll go for Itchy 'n Scratchy.

Of course, there are other conditions besides eczema that cause itch: liver or kidney disease, or shingles. And when you start scratching a hole in your head, it's time to medicate.

The new centers in the U.S. may launch at the University of California, San Francisco; Washington University in St. Louis; and Harvard. Since I live in the SF Bay Area, this is pretty exciting for me (and not so exciting for you, if you don't). But there's another issue: this is the U.S., with its messed-up medical "system," and my current insurance doesn't cover treatment at UCSF, which is ridiculous, since I WORK at the University of California. Say UCSF launched an itch center, and I really needed an appointment; it might be that my doctor could refer me to UCSF. Or I might have to pay out of pocket. It would be a lot simpler if the U.S., or even California, had something approaching a single-payer healthcare system.

These centers are, at the moment, pie-in-the-sky. But they could happen. Timothy Berger, MD, at UCSF, claims in the Skin & Allergy News piece that "The NIH is moving to a model of having major itch referral centers at several sites." Berger was quoted commenting on a recent "roundtable" session hosted by the National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS), part of NIH: the roundtable was focused on exclusively on itch, and was the first such discussion held by NIAMS. It came about because of lobbying by the National Eczema Association, according to Julie Block, the NEA's CEO, who told me so last week in our conversation. "We're so excited we got NIAMS looking," she said. "There's nothing ever been done so specific to itch." Block, or another NEA representative, was invited to take part in the roundtable.

Did I mention that you should donate to the NEA?

According to Trish Reynolds, the media rep at NIAMS, they'll post a meeting summary by the end of December. I'll be interested to read it and to get comment from the scientists involved about what they think is feasible.

End Eczema's mission: please donate to the NEA for research

This past Thursday I spoke on the phone with Julie Block, president and CEO of the National Eczema Association, and Diane Dunn, the NEA's communications and program manager.

I thought that Julie and Diane's outlook was very similar to mine. Eczema is a disease that affects millions of people (in the U.S., 20% of children and 2% of adults, which probably means that 50 million people live with it in the home). It can drastically affect quality of life. It leaves a sufferer open to serious infections such as MRSA, and disqualifies them for military service.

And yet you hardly ever see eczema mentioned in the media. (Can you think of any blogs? Any celebrities?) You rarely, if ever, hear of any fundraising efforts for it. It is, despite being a disease of the skin--and we use the term "skin deep" for something that you have to look beyond to find the essence--virtually invisible.

This is probably because most of us cover it up. I know I do. Why would I want to expose an unsightly rash that reveals my lack of self-control? I wear long pants and shirts with collars and long sleeves. I go to the swimming pool only with great reluctance. People stare, sometimes. They hustle their babies away from your kids to avoid what looks like a contagious rash. We who live with it are ashamed; those who don't are ignorant.

The NEA was the first eczema patient advocacy organization I have heard of in my lifetime. I think they're amazing and they deserve our support. They are primarily dedicated to education and outreach; and this is good. We need to educate ourselves about the best therapies. We need to educate others so they understand. We need to exert pressure on our representatives in government so they direct federal research funding to eczema.

The NEA doesn't make a priority of research, and it can't be faulted. If you've got an annual budget of $500k and several salaries to pay, along with the travel expenses of a national association, you can't  make a significant investment in research. A single molecular biology laboratory, at any major university or institute--Johns Hopkins, U. of Washington, Stanford--runs on at least $1 million a year. A single graduate student costs $50,000 a year. Reagents, antibodies, experimental animals are terribly expensive. The responsibility for funding the research effort lies with the federal government, via the National Institutes of Health.

But there are ways in which grants on the order of $100,000 can make a difference. They can prime the pump; often, in academic research, to get money, you need to have money already, because many agencies will only deliver matching funds. And if you can show that someone believes in your project to the extent of handing over $100k, you can make a better case for why the NIH should give you $1 million. The NEA has seen this happen with grants to researchers Eric Simpson and Gil Yosipovitch.

Also, there is one crucial, oft-neglected zone called the "valley of death." Scientists may make a discovery, funded by the NIH, and this discovery may hold the potential to be a world-changing cure, but if it doesn't get translated into a product or service that can be delivered or manufactured by a commercial company, it stands virtually no chance of helping anyone in the real world. NIH funding drops off steeply after a discovery is made. And venture capitalists won't invest in a project or startup that hasn't shown a viable prototype or undergone clinical trials. The "valley of death" is the arid region between federal and venture funding where many promising ideas have met their end.

Proof-of-concept funding, in packages of $100k, can enable an academic scientist to fund a postdoctoral fellow for a year and buy equipment and supplies to run crucial experiments, build vital prototypes, and do the research to show that their technology has a market. Two examples of institutes that provide this type of funding are University College London Business and QB3, the California Institute for Quantitative Biosciences. In the U.S., proof-of-concept funding can enable a startup company to win a federal Small Business Innovation Research (SBIR) grant that helps it get off the ground.

So: if the NEA were able to make several annual awards of about $50-100k, it could give eczema research leverage that would amplify federal funding and/or increase the rate at which practical cures emerge.

I believe in the NEA and so I am dedicating this blog to the purpose of raising $1 million for the NEA to devote to research. I'm hoping that people who are thus inspired to donate to the NEA will mention my blog to the NEA, so I can have some idea whether I'm getting close to my goal.

And ultimately, the real goal is to end eczema.