Today’s post is long. It’s long because it involves the winding path that science can take from ignition to exploding into the public view… and how the twists and turns in that path can result in a skewed representation and understanding of the science. Read the whole thing. It focuses on an example that involves autism–which seems to pop up in skewed representations every day–but certainly this path from science to you, the consumer, happens with scientific information in general. The author is Jess, who blogged this originally at “Don’t Mind the Mess” and graciously gave us permission to reproduce it here. Jess, an attorney with a B.S. in biochemistry, parent of an autistic child and brand new baby, and self-described “Twitter fiend,” tweets as @JessicaEsquire.
I am putting my foot down.
As the parent of an autistic child I hear a lot about vaccines and about half a million other things that people think cause autism.
I’m hyperaware of the attention autism gets in the media. So I know about the CDC’s new stats on autism rates. I know about the debate on whether the increase in autism is due to more awareness and diagnosis or more actual occurrences. (Personally, I find the former to be a serious factor, though who’s to say how much.) And I see all the articles that come out week after week about the millions of things that are linked to autism.
There’s a recurring problem here. Valuable research is done. Research is disseminated. Information is reported. Articles are read. Findings are spread. What starts in a lab ends up in a Facebook status. What starts as truth ends up as mistruth in something like a child’s game of telephone. Along the way, piece by piece, truth fades away in favor of headlines and pageviews and gossip.
It’s getting just plain stupid. I’m starting to suspect these articles have nothing to do with serious research but with a search for traffic and hype, an attempt to ride the wave of a trendy topic as concerned parents read every horror story they can find.
A particularly egregious one came up recently. This one doesn’t just cite some random correlation. This one is just plain making things up. The problems here just pile one on top of the other. So let’s consider it piece by piece, a case study in how real research becomes misinformation.
Part One: Research
It starts with scientists. It starts with research. They write up their findings and publish them in a peer-reviewed scientific journal. In this case there are several papers published over a few years about chemicals and their link to brain development. They cover a wide variety of issues and present a wide variety of conclusions. All of them suggest further study.
Maybe they have bad methodology or use statistics incorrectly. Only a few people would ever know the difference. That’s not my concern today. Bad science is one thing, but bad information on good science is another. So let’s assume we have good, solid science in this research.
Part Two: The Conference
Scientists and researchers with similar interests get together and discuss their findings. It’s not that difference from any other conference. There are panels and presentations.
Part Three: The Op-Ed
Next, a group that works on environmental hazards for children publishes a paper. Not a research study but an op-ed in a peer-reviewed journal. In this op-ed they review the conference from Part Two and encourage the study of environmental factors and their relationship to neurodevelopment disorders. Autism is one of many neuro-ish disorders and is mentioned by name in the piece and its title. It’s unclear to me why they zero in on autism. They have a couple vague pieces of evidence that are autism-specific, but the vast majority of what they’re looking at has never been demonstrated to have any kind of relationship to autism, not even a correlation.
Problem #1 is the unnecessary autism name-checking. Problem #2 is much worse, it’s the list of 10 chemicals they suggest for future study. The list itself isn’t a bad idea, I guess. They’re suggesting places for potential research, which certainly needs to be done. But it does reek a little bit of the kind of thing magazines do, you know what I mean, 10 Ways To Get Your Guy All Fired Up! and such. Still, it’s their prerogative.
So let’s examine their evidence for these suggestions. They cite at least one paper for each of these chemicals. I checked them all. The vast majority of them have never shown any connection to Autism (or even ADHD, another diagnosis they name-check). In fact, many of them show that with exposure to these chemicals, the outcome differentials between exposure and non-exposure is 5 IQ points.
FIVE IQ POINTS. Statistically significant? Perhaps. Practically important for a parent? No.
IQ itself is a strange and vague thing. And 5 points isn’t going to move your super-genius down to the level of an average person They’d still be a super-genius. And adding 5 points to someone with severe deficits isn’t going to make them average, either. It’s hard to imagine what difference you’d see between two people whose IQ’s are 5 points apart.
Such statistical differences may well be a sign to warrant further study. And they may be a sign that these chemicals affect neurological development. But it’s getting a bit ahead of ourselves to say they are suspected of being tied to autism. Many of these papers are in areas of research that are just beginning. Many of them involve homogeneous groups (for example, all the participants are Mexican-American migrant workers) which makes issues of genetics and heredity very difficult to account for. Many involve parents self-reporting by filling out surveys rather than having the children examined by professionals.
Let’s be fair. These are the very beginnings of research. You’ll need to do all sorts of rigorous testing and consideration to make real connections. Of course more research is needed. And it’s important that we keep that in mind as we move forward.
(Though, of course, no one else will.)
Part Four: The Press Release
The op-ed is about publicity so it’s the beginning of the problem. But it gets worse.A press release comes out with the list of ten chemicals and already the twisting starts. These are chemicals suggested for further research, but suddenly they’re a ”List of the Top Ten Toxic Chemicals Suspected to Cause Autism and Learning Disabilities.” This, unsurprisingly, is the headline you’ll see all over the internet when news organizations report on the press release. Already it’s turned from suggestions for research into a watchlist.
It gets worse. The press release has this second headline:
The editorial was published alongside four other papers — each suggesting a link between toxic chemicals and autism.
No, actually that’s not at all accurate.
Let’s start with the first paper, which examines the possibility of a connection between maternal smoking and autism. What’s their conclusion?
The primary analyses indicated a slightly inverse association with all ASDs[.]
What does that mean? Among the autistic kids vs. regular kids, there was actually LESS maternal smoking in the autism group. The paper does point out that when it comes to “subgroups,” for instance high-functioning ASD or Asperger’s, there may be a possibly positive relationship. But there are so many caveats I can’t even get to them all. Let’s just take this one:
The ASD subgroup variables were imperfect, relying on the child’s access to evaluation services and the documentation by a myriad of community providers, rather than direct clinical observation.
This means that when they’re saying some groups of ASD kids may have this relationship, they didn’t actually classify these kids. They never saw these kids. They’re relying on data collected by other people. Not even by a consistent set of people. It comes from 11 different states and who knows how many providers. Who’s to say how accurate any of it is. And who’s to say whether these kids are correctly classified at their particular place on the spectrum.
So take all that with a whole jar full of salt and you’re still looking at, overall, no connection with smoking. If anything, the data would indicate smoking has LESS autism rather than more.
After this there are 2 papers on the same chemical. One of them does not contain the word “autism” anywhere. (One of its references has it, but nowhere does it appear in the text of their paper.) The second paper is better. It focuses on the chemical’s effects in particular processes which have been linked to autism. This is very micro-scale science, there are no people involved, just cells and chemicals. It’s important research, but there’s a long stretch between cellular interactions and a person’s diagnosis. It didn’t involve any analysis with autistic individuals. This is certainly the most useful paper of the bunch by a long shot, but it still just sets the stage for further research.
The fourth paper is a review. That means it asserts no new information but summarizes the research on a particular issue, specifically pesticides and autism. Technically I suppose it does assert a link, but none of this is new information.
So I think we’ve pretty much destroyed the headline in that press release. There were not 4 articles suggesting a connection between chemicals and autism.
Is it likely that the writers who take this press release and write articles on it are going to read the papers it cites? Are they going to realize that what they’re saying isn’t actually true? They should. Of course they should. But they don’t.
This list has chemicals suspected of being tied to neurological development. And we should just leave it at that. It’s not that they shouldn’t be studied. They should. But we shouldn’t be throwing out buzzwords like ADHD and Autism when the research doesn’t show any firm data.
Part Five: News Articles
This is a process, though. First research, then op-ed, then press release and finally news articles. So what’s the headline of our news article? “Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities.” Guilty of serious fearmongering, no? A more accurate title may be: Researchers propose list of chemicals potentially tied to neurological development for further study. But I doubt anyone’s going to write that.
The article itself, to be fair, is full of caveats. The reasons for the increase in autism are “controversial.” There is a “gap in the science.” But then you get a sentence like this:
But clearly, there is more to the story than simply genetics, as the increases are far too rapid to be of purely genetic origin.
Clearly? Clearly says who? What source says it’s too rapid? The author certainly isn’t a reliable source. She is Robyn O’Brien, a writer for Prevention who posted this article. Her scientific credentials are nonexistent. She is a former financial analyst who now writes about the food industry. She has an MBA, and her undergraduate was in French and Spanish.
Full disclosure: I have a B.S. in Biochemistry, but I feel I’m unqualified to write this article. I’d much rather it be written by someone with a PhD. I’m married to a PhD, which has given me a lot more exposure to science since leaving school, but I fully acknowledge that I shouldn’t be the one doing this. I know how to read a scientific article and examine its conclusions, but I certainly am not someone who can tell you if their methods and analysis are correct.
But I’m talking because there aren’t enough people talking about it. Because the PhD’s aren’t generally science writers. They are scientists. They write about their research in journals, not in the newspaper. And certainly not on a blog for a healthy living magazine.
The author goes on to restate the inaccurate subheadline of the press release verbatim.
In the end she suggests things like buying organic produce, opening your windows and buying BPA-free products.
This is part 5 of our process, but it’s where many of us start. Many of us will only read this article and not the press release or the op-ed or the research papers. Most of us aren’t qualified to do so, all we have is this article. Well, we have that and what other people tell us. Which leads us to our next step.
Part Six: Readers
The article is frustrating, but I can only get so mad. She is saying what the scientists told her to say. She has even included some cautionary language. The problem is that when writing for laymen, you have to be careful.
And with AUTISM? You have to be really careful. Just for you I’m going to venture into the comments to this article to show you how people have responded.
–How about we quit injecting our kids with aluminum, formaldehyde and the rest of the toxic stew that they call vaccines — we bypass every natural defense our bodies have (skin, saliva, stomach acid) to put these things directly in the blood stream.
–Thank you Robyn for always providing sound information to continue guiding our decisions.
–What about heavy metals like Arsenic that are trapped in soils that our “organic” brown rice is growing in to be made into brown rice syrup to sweeten organic foods and baby formula? Not to mention the reports coming in regarding the radiation and contamination from Fukushimi that has reached the west coast an is spreading across this country in the produce and even the pollen…
–Unvaccinated children are some of the healthiest little people on the planet. As far as the Autism link, who really knows but why risk it.
–Thank you for this information. It confirms to me that we should keep doing what we are doing. It also helps me to enforce our no shoes policy in our home. Some people are so disrespectful and just don’t take them off and I hate to sound like a nag and ask even though they already know its what we prefer.
Thankfully there are some people in there who take the writer to task, but how is a reader to trust any one commenter over another? You have no way of knowing from a comment what someone’s experiences or qualifications are.
There’s a reason we need responsible scientific reporting. I’m all for the open dissemination of information, but I’m also aware of what happens when people read something they don’t understand.
I encountered this FB conversation the other day. Usually I overlook such things but I could not help myself. I jumped in. I tried hard to be polite and present facts. When all that was over, no one was convinced. The response?
Enough articles on vaccines and people are scared even without evidence. Enough headlines and people don’t bother reading articles. It doesn’t matter how much is retracted or debunked, the damage is done.
We need responsible science reporting. We need responsible reporting, period. I’ve seen plenty of lazy articles on Supreme Court opinions that lead me to read the opinion myself only to realize that they’ve stated the conclusions all wrong.
I don’t want to go on all day, but I do feel like it’s important for us to put our foot down and demand better.
We aren’t all scientists. But we can ask for science writers with the appropriate qualifications. We can ask for links and citations in their articles. (I spent quite some time tracking everything down for this post, and luckily I’m relatively familiar with looking up scientific articles online.) We can ask for articles that show failed connections. It doesn’t all have to be “Autism linked to X” there’s plenty of “Autism not linked to Y” that happens in these studies but you never see that, do you?
As for us laymen, we have to find our own trusted experts. Ask your pediatrician. And if your pediatrician’s not qualified (most of them are MD’s but not PhD’s) ask them if they have a trusted source. Track down specialists in Autism with PhD’s and ask them what they think of the research. Find reliable books and articles and spread them to your friends. We can’t necessarily do a lot, but we can do our part to stop the spread of misinformation and demand better.
These views are the opinion of the author and do not necessarily either reflect or disagree with those of the DXS editorial team.
How often have you wished for an extra hour or extra day to get everything you need done? At the Autism Science Foundation (ASF), we want to make the most of this special leap day by using it to help autism science leap forward.
Thanks to your support, for the last two years we have provided funding for autism stakeholders (parents, individuals with autism, teachers, students, etc) to attend the International Meeting for Autism Research (IMFAR). All donations made today, February 29, 2012, will go directly to our IMFAR Travel Grants program, helping us provide more scholarships to IMFAR 2012 in Toronto where they will share their real world autism experience with scientists. These stakeholders will then bring the latest autism science back into our communities helping the science take a giant leap forward.
After attending IMFAR, past grant recipients have: - Organized a five day autism science seminar at Barnard College - Presented critical autism research information to nurses in Philadelphia - Produced multiple blog posts that reached thousands of readers around the world - Organized an autism awareness club and speaker series at Yale College
And thanks to a generous donor, all donations made today (February 29, 2012) will be matched dollar for dollar for an extra big leap.
The Autism Science Foundation was founded in 2009 as a nonprofit corporation organized for charitable and educational purposes, and exempt from taxation under section 501(c)(3) of the IRS code.
The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
Have you seen the headlines? Skip them You’ve probably seen a lot of headlines lately about autism and various behaviors, ways of being, or “toxins” that, the headlines tell you, are “linked” to it. Maybe you’re considering having a child and are mentally tallying up the various risk factors you have as a parent. Perhaps you have a child with autism and are now looking back, loaded with guilt that you ate high-fructose corn syrup or were overweight or too old or too near a freeway or not something enough that led to your child’s autism. Maybe you’re an autistic adult who’s getting a little tired of reading in these stories about how you don’t exist or how using these “risk factors” might help the world reduce the number of people who are like you. Here’s the bottom line: No one knows precisely what causes the extremely diverse developmental difference we call autism. Research from around the world suggests a strong genetic component[PDF]. What headlines in the United States call an “epidemic” is, in all likelihood, largely attributable to expanded diagnostic inclusion, better identification, and, ironically, greater awareness of autism. In countries that have been able to assess overall population prevalence, such as the UK, rates seem to have held steady at about 1% for decades, which is about the current levels now identified among 8-year-olds in the United States. What anyone needs when it comes to headlines honking about a “link” to a specific condition is a mental checklist of what the article–and whatever research underlies it–is really saying. Previously, we brought you Real vs Fake Science: How to tell them apart. Now we bring you our Double X Double-Take checklist. Use it when you read any story about scientific research and human health, medicine, biology, or genetics. The Double X Double-Take: What to do when reading science in the news 1. Skip the headline. Headlines are often misleading, at best, and can be wildly inaccurate. Forget about the headline. Pretend you never even saw the headline. 2. What is the basis of the article? Science news originates from several places. Often it’s a scientific paper. These papers come in several varieties. The ones that report a real study–lots of people or mice or flies, lots of data, lots of analysis, a hypothesis tested, statistics done–is considered “original research.” Those papers are the only ones that are genuinely original scientific studies. Words to watch for–terms that suggest no original research at all–are “review,” “editorial,” “perspective,” “commentary,” “case study” (these typically involve one or only a handful of cases, so no statistical analysis), and “meta-analysis.” None of these represents original findings from a scientific study. All but the last two are opinion. Also watch for “scientific meeting” and “conference.” That means that this information was presented without peer review at a scientific meeting. It hasn’t been vetted in any way. 3. Look at the words in the article. If what you’re reading contains words like “link,” “association,” “correlation,” or “risk,” then what the article is describing is a mathematical association between one thing (e.g., autism) and another (e.g., eating ice cream). It is likely not describing a biological connection between the two. In fact, popular articles seem to very rarely even cover scientific research that homes in on the biological connections. Why? Because these findings usually come in little bits and pieces that over time–often quite a bit of time–build into a larger picture showing a biological pathway by which Variable 1 leads to Outcome A. That’s not generally a process that’s particularly newsworthy, and the pathways can be both too specific and extremely confusing. 4. Look at the original source of the information. Google is your friend. Is the original source a scientific journal? At the very least, especially for original research, the abstract will be freely available. A news story based on a journal paper should provide a link to that abstract, but many, many news outlets do not do this–a huge disservice to the interested, engaged reader. At any rate, the article probably includes the name of a paper author and the journal of publication, and a quick Google search on both terms along with the subject (e.g., autism) will often find you the paper. If all you find is a news release about the paper–at outlets like ScienceDaily or PhysOrg–you are reading marketing materials. Period. And if there is no mention of publication in a journal, be very, very cautious in your interpretation of what’s being reported. 5. Remember that every single person involved in what you’re reading has a dog in the hunt. The news outlet wants clicks. For that reason, the reporter needs clicks. The researchers probably want attention to their research. The institutions where the researchers do their research want attention, prestige, and money. A Website may be trying to scare you into buying what they’re selling. Some people are not above using “sexy” science topics to achieve all of the above. Caveat lector. 6. Ask a scientist. Twitter abounds with scientists and sciencey types who may be able to evaluate an article for you. I receive daily requests via email, Facebook, and Twitter for exactly that assistance, and I’m glad to provide it. Seriously, ask a scientist. You’ll find it hard to get us to shut up. We do science because we really, really like it. It sure ain’t for the money. [Edited to add: But see also an important caveat and an important suggestion from Maggie Koerth-Baker over at Boing Boing and, as David Bradley has noted over at ScienceBase, always remember #5 on this list when applying #6.] —————————————————————————– Case Study Lately, everyone seems to be using “autism” as a way to draw eyeballs to their work. Below, I’m giving my own case study of exactly that phenomenon as an example of how to apply this checklist. 1. Headline: “Ten chemicals most likely to cause autism and learning disabilities” and “Could autism be caused by one of these 10 chemicals?” Double X Double-Take 1: Skip the headline. Check. Especially advisable as there is not one iota of information about “cause” involved here. 2. What is the basis of the article? Editorial. Conference. In other words, those 10 chemicals aren’t something researchers identified in careful studies as having a link to autism but instead are a list of suspects the editorial writers derived, a list that they’d developed two years ago at the mentioned conference. 3. Look at the words in the articles. Suspected. Suggesting a link. In other words, what you’re reading below those headlines does not involve studies linking anything to autism. Instead, it’s based on an editorial listing 10 compounds [PDF] that the editorial authors suspect might have something to do with autism (NB: Both linked stories completely gloss over the fact that most experts attribute the rise in autism diagnoses to changing and expanded diagnostic criteria, a shift in diagnosis from other categories to autism, and greater recognition and awareness–i.e., not to genetic changes or environmental factors. The editorial does the same). The authors do not provide citations for studies that link each chemical cited to autism itself, and the editorial itself is not focused on autism, per se, but on “neurodevelopmental” derailments in general. 4. Look at the original source of information. The source of the articles is an editorial, as noted. But one of these articles also provides a link to an actual research paper. The paper doesn’t even address any of the “top 10″ chemicals listed but instead is about cigarette smoking. News stories about this study describe it as linking smoking during pregnancy and autism. Yet the study abstract states that they did not identify a link, saying “We found a null association between maternal smoking and pregnancy in ASDs and the possibility of an association with a higher-functioning ASD subgroup was suggested.” In other words: No link between smoking and autism. But the headlines and how the articles are written would lead you to believe otherwise. 5. Remember that every single person involved has a dog in this hunt. Read with a critical eye. Ask yourself, what are people saying vs what real support exists for their assertions? Who stands to gain and in what way from having this information publicized? Think about the current culture–does the article or the research drag in “hot” topics (autism, obesity, fats, high-fructose corn syrup, “toxins,” Kim Kardashian) without any real basis for doing so? 6. Ask a scientist. Why, yes, I am a scientist, so I’ll respond. My field of research for 10 years happens to have been endocrine-disrupting compounds. I’ve seen literally one drop of a compound dissolved in a trillion drops of solvent shift development of a turtle from male to female. I’ve seen the negative embryonic effects of pesticides and an over-the-counter antihistamine on penile development in mice. I know well the literature that runs to the thousands of pages indicating that we’ve got a lot of chemicals around us and in us that can have profound influences during sensitive periods of development, depending on timing, dose, species, and what other compounds may be involved. Endocrine disruptors or “toxins” are a complex group with complex interactions and effects and can’t be treated as a monolith any more than autism should be. What I also know is that synthetic endocrine-disruptors have been around for more than a century and that natural ones for far, far longer. Do I think that the “top 10″ chemicals require closer investigation and regulation? Yes. But not because I think they’re causative in some autism “epidemic.” We’ve got sufficiently compelling evidence of their harm already without trying to use “autism” as a marketing tool to draw attention to them. Just as a couple of examples: If coal-burning pollution (i.e., mercury) were causative in autism, I’d expect some evidence of high rates in, say, Victorian London, where the average household burned 11 tons of coal a year. If modern lead exposures were causative, I’d be expecting records from notoriously lead-burdened ancient Rome containing descriptions of the autism epidemic that surely took it over. Bottom line: We’ve got plenty of reasons for concern about the developmental effects of the compounds on this list. But we’ve got very limited reasons to make autism a focal point for testing them. Using the Double X Double-Take checklist helps demonstrate that. By Emily Willingham, DXS managing editor
If a child is diagnosed with autism spectrum disorder (ASD), it is because they have gone through a number of rigorous behavioral tests, often over a period of time, and never straightforward. Of course, this time can be a stressful for parents or caregivers, and sometimes the answers can lead to even more questions. One solution to the waiting and uncertainty would be to have a medical test that could more easily diagnose ASD. However, no one has been able to identify biomarkers – molecules in the body that can help define a specific medical condition – for the condition. Without this type of information, it is not possible to create a diagnostic test for autism.
Having been through this process with their son, who is on the autism spectrum, Clarkson University scientists Costel Darie and Alisa Woods have decided to work together to help address this issue. An interdisciplinary laboratory that combines hardcore proteomics (the study of the proteins we make) with cognitive neuroscience is probably not what you think of when it comes to running a family business. But for Darie and Woods, “marriage” has many meanings. This husband and wife team has combined their brainpower to embark on a scientific journey toward understanding some of the biochemistry behind autism, and they are walking on an increasingly popular path to help finance their work: crowdfunding.
A major goal of the Darie Lab is to identify biomarkers that are associated with autism and then to create a medical test to help alleviate some of the frustrations that come with the ASD diagnostic process. Using a technology called high-definition mass spectrometry, the Darie Lab has outlined a project to figure out the types of proteins that are in the saliva or blood of children with ASD and compare these protein profiles to the saliva or blood from children who are not on the autism spectrum. If the Darie Lab is successful, they might be able to help create a diagnostic test for early autism detection, which would undoubtedly fill a giant void in the field of autism research and treatment.
Here is how the experiment will work: The members of the Darie Lab will collect saliva (and/or blood) samples from children, half of whom are on the autism spectrum and half of whom are not. The researchers will prepare the saliva or blood and collect the proteins. Each protein will be analyzed by a high definition mass spectrometer, which is basically a small scale for measuring the weight and charge of a protein. The high definition mass spectrometer will transfer information about the proteins to a computer, with special software allowing the Darie Lab investigators to figure out the exact makeup of proteins in each sample.
The bottleneck when it comes to these experiments is not getting samples (saliva and blood are easy to collect), and it isn’t the high-tech high-definition mass spectrometer because they have access to one. Rather, the bottleneck comes from the very high cost of the analytical software they need. Because this software was not included in their annual laboratory budget but is critical to conducting this experiment, the Darie Lab is raising money through crowdfunding.
Why I think a contribution is worth the investment: Technology is always advancing, especially when it comes to protein biochemistry. The high-definition mass spectrometer is a recent technology, and according to the Darie Lab, they have been able to identify over 700 proteins in the saliva alone. This is quite an incredible step up from traditional mass spectrometers, which could detect only around 100 proteins in saliva. Just because we haven’t been able to identify biomarkers for autism in the past doesn’t mean we can’t do it now.
In addition to the use of this new technology, the Darie Lab presents some compelling preliminary evidence for a difference in protein profiles between those with ASD and those who do not have ASD. While they’ve examined only three autistic people and compared them to three non-ASD individuals, the two groups were clearly distinct in their saliva protein profiles. If this pattern holds up with an increased number of study participants, the implications could be quite significant for autism research.
Preliminary data from the Darie Lab shows that there are saliva proteins showing a 20X or greater difference between ASD (ovals) versus sibling non-ASD controls (rectangles).
If you decide to kick in some funds, your good deed will not go unrewarded. As a thank-you for contributing, the Darie Lab has offered up a few cool perks, including high-quality prints of microscopic images in the brain.
If you are looking for a good cause, look no further. I am excited to see how the Darie Lab crowdfund experience goes, and I wish them all the best in their quest, both as professionals and as parents. To find out more, or to make a donation, visit the Darie Lab RocketHub page.
Fluorescent images of the brain, available to those donating $100 or more.
The opinions expressed in this post do not necessarily agree or conflict with those of the DXS editorial team and contributors.
On February 6, 2012, the world lost not one, but two amazing women to breast cancer: Susan Niebur, also known as WhyMommy; and Rachel Cheetham Moro of The Cancer Culture Chronicles. Both women spoke candidly about their individual battle with metastatic breast cancer. Their deliberate determination to beat this thing was always apparent, whether they showed it through humor (see this “Favorite Things” post by Rachel), or through a deeply rooted sense of gratitude, as exemplified by Susan’s “Going HOME!” post.
Unfortunately, Susan and Rachel are not anomalies. They are but two of the approximately 40,000 women (in US alone) projected to lose the battle in 2012.
Breast cancer affects 1 in 8 women. These odds put someone you know – your wife, mother, sister, girlfriend, aunt, daughter, friend, cousin, neighbor, co-worker – at risk.
In the “Goodbye” post written by Susan Niebur’s husband Curt (WhyDaddy), he made the following request:
To help uphold that request, and to honor Susan, Rachel, and the thousands of women and men diagnosed with breast cancer each year, we at Double X Science have compiled a list of breast cancer charities. If you have the means, please take time to donate.
What I have learned from Susan Niebur is that there is more than one kind of breast cancer, and lumps are not required. This foundation is dedicated to researching the mechanisms involved in the development of inflammatory breast cancer (IBC), a rare but extremely aggressive cancer comprising 1-5% of all breast cancer cases in the US.
Located in the Houston area, The Rose is a non-profit organization dedicated to providing women with breast health essentials, such as mammography screening, diagnosis, support, and treatment to any and all women, regardless of ability to pay.
This brazen organization is dedicated to eradicating breast cancer BY JANUARY 1, 2020. That’s less than 8 years from now. Imagine that. The NBCCF encompasses hundreds of smaller organizations and represents millions of patients, along with their health care professionals, family, friends, etc.
Contrary to popular belief, breast cancer affects younger women too. In fact, I have two friends that were diagnosed before the age of 30. The mission of this organization is to help scientists and physicians better serve young women affected by breast cancer.
The mission of the National Breast Cancer Foundation is to increase breast cancer awareness and education. They’ve also partnered with medical centers across the US to provide free mammography services and diagnostic services to underserved women.
This is a national education and support organization dedicated to help those who are newly diagnosed, in treatment, or are beyond treatment stages. It also serves as a support network for the friends and family of those affected by breast cancer. They have a Survivor’s Helpline – (888) 753-LBBC (5222) – run by trained volunteers and sponsor many conferences in the name of breast cancer education.
Breastcancer.org serves to educate those living with breast cancer, providing the most up to date scientific literature so that those affected by breast cancer can make informed decisions on their health and well being. You can watch a video about how Breastcancer.org has helped those in need.
If you would like to learn more about these organizations, including how they compare to others across the country, you can go to Charity Navigator.