Congressman exposing the CDC deception by a whistleblower

According to a report, it is estimated that autism spectrum disorders could cost the US government $1 trillion in expenses by 2015. What is the reason for this rise. There is a great debate among the general population about whether its linked to vaccines.

I think its high time the truth be disclosed.

A U.S. representative and a CDC doctor whistle blower have courageously called for an investigation after learning doctors threw into garbage cans important research evidence about MMR vaccine’s relationship to autism that has cost $3 billion in injury compensations. Below is a transcript published Monday in Vaccine Reaction Medical Journal of a statement read on the floor of the United States House of Representatives on July 29, 2015 by U.S. Representative Bill Posey (R-FL) of Florida’s 8th District regarding vaccine study tampering and autism

Video trancript

It’s troubling to me that in a recent Senate hearing on childhood vaccinations, it was never mentioned that our government has paid out over $3 billion to a Vaccine Injury Compensation Program for children who have been injured by vaccinations. Regardless of the subject matter, parents making decisions about their children’s health deserve to have the best information available to them. They should be able to count on federal agencies to tell them the truth. For these reasons, I bring the following matters to the House floor.

In August 2014, Dr. William Thompson, a senior scientist at the Centers for Disease Control and Prevention, worked with a whistleblower attorney to provide my office with documents related to a 2004 CDC study that examined the possibility of a relationship between mumps, measles, rubella vaccine and autism. In a statement released in August 2014, Dr. Thompson stated:

I regret that my co-authors and I omitted statistically significant information in our 2004 article published in the Journal of Pediatrics.

Mr. Speaker, I respectfully request the following excerpts from the statement written by Dr. Thompson be entered into the [Congressional] Record. Now quoting Dr. Thompson:

My primary job duties while working in the Immunization Safety branch from 2000 to 2006 were to lead or co-lead three major vaccine safety studies. The MADDSP MMR autism cases control study was being carried out in response to the Wakefield Lancet study that suggested an association between the MMR vaccine and an autism-like health outcome. There were several major concerns among scientists and consumer advocates outside the CDC in the fall of 2000 regarding the execution of the Verstraeten study.

One of the important goals that was determined upfront in the spring of 2001 before any of these studies started was to have all three protocols vetted outside the CDC prior to the start of the analyses so that consumer advocates could not claim that we were presenting an analysis that suited our own goals and biases. We hypothesized that if we found statistically significant effects at either 18- or 36-month thresholds, we would conclude that vaccinating children early with MMR vaccine could lead to autism-like characteristics or features.

We all met and finalized the study protocol and analysis plan. The goal was to not deviate from the analysis plan to avoid the debacle that occurred with the Verstraeten thimerosal study published in the Pediatrics in 2003. At the September 5th meeting, we discussed in detail how to code race for both the sample and the birth certificate sample. At the bottom of Table 7 it also showed that, for the non-birth certificate sample, the adjusted race effect, statistical significance was huge.

All the authors and I met and decided sometime between August and September 2002 not to report any race effects for the paper. Sometime soon after the meeting, we decided to exclude reporting any race effects. The co-authors scheduled a meeting to destroy documents related to this study. The remaining four co-authors all met and brought a big garbage can into the meeting room and reviewed and went through all the hard copy documents that we had thought we should discard, and put them in a huge garbage can.

However, because I assumed it was illegal and would violate both FOIA (Freedom of Information Act) and DOJ (Department of Justice) requests, I kept hard copies of all documents in my office and retained all associated computer files. I believe we intentionally withheld controversial findings from the final draft of the Pediatrics paper.

End of the doctor’s quote.

Measles death in Washington state 1st in U.S. since 2003

Source: CBC News

A Washington woman died from measles in the spring — the first measles death in the U.S. since 2003 and the first in the state since 1990, health officials said Thursday.

The woman lacked some of the measles’ common symptoms, such as a rash, so the infection was not discovered until an autopsy, Washington State Department of Health spokesman Donn Moyer said.

This is the 11th case of measles in Washington — and the sixth in Clallam County — this year, Moyer said.

Measles is highly contagious and spreads when an infected person breathes, coughs or sneezes. However, dying from it is extremely rare, Moyer said.

Officials didn’t say whether the woman was vaccinated, but they did note she had a compromised immune system. They withheld her age to protect her identity but said she was not elderly.

The woman was hospitalized for several health conditions in the spring at a facility in Clallam County, which covers the northern part of the Olympic Peninsula.

She was there at the same time as a person who later developed a rash and was contagious for measles, Moyer said. That’s when the woman most likely was exposed.

Immunization provides community protection

She was on medications that contributed to her weakened immune system, he said.

After being treated in Clallam County, the woman was moved to the University of Washington Medical Center in Seattle, where she died. An autopsy concluded the cause of death was pneumonia due to measles.

“This tragic situation illustrates the importance of immunizing as many people as possible to provide a high level of community protection against measles,” Moyer said.

“People with compromised immune systems cannot be vaccinated against measles. Even when vaccinated, they may not have a good immune response when exposed to disease; they may be especially vulnerable to disease outbreaks.”

The last active case of measles in Washington was reported in late April.

It’s possible to develop measles within three weeks of exposure. Since three weeks have passed since the last measles case, no one who had contact with the known cases is at risk, Moyer said.

Most People Don’t Know How To Read A Sunscreen Label, According To Study

Source: Huffington Post (By: Elizabeth Palermo)

You know you should wear sunscreen, but do you know what to look for in a sunscreen? If you answered “nope” to that question, you’re not alone. Lots of people have trouble picking out a bottle of sunblock, a new study suggests.

Fewer than half of the 114 study participants could correctly identify how well a sunscreen protected against health problems such as sunburn, photoaging (premature aging of skin) caused by exposure to sunlight) and skin cancer just by looking at the product’s label, according to the researchers at Northwestern University Feinberg School of Medicine in Chicago who conducted the study.

Only 49 percent of the participants surveyed knew what the letters “SPF” on a sunscreen bottle stood for. (It’s an acronym for “sun protection factor.”)

And it’s not just the small sampling of people who participated in the study who have trouble deciphering sunscreen labels, said Dr. Jennifer Stein, an assistant professor of dermatology at New York University’s Langone Medical Center who was not involved in the study.

“At least half of the patients I see — especially this time of year — ask me questions about sunscreen,” Stein told Live Science. “Very frequently, people are confused about the different kinds of protection they can get from sunscreen. And everybody wants to know what to look for.”

One of the reasons people might have trouble deciphering sunscreen labels could be that, prior to 2012, these labels looked a bit different from how they appear now. In the past, sunscreen manufacturers were required to display only one bit of information — the SPF rating, which shows how well a product protects against ultraviolet B (UVB) rays. UVB rays are the kind that can ruin a day at the beach, causing sunburns and, by extension, skin cancer.

SPF ratings are pretty straightforward, said Dr. Roopal Kundu, an associate professor of dermatology at Northwestern, who supervised the study.

“An SPF of 30 will filter about 97 percent of UVB rays. An SPF of 50 will filter about 98 percent of UVB rays,” Kundu told Live Science.

Although most of the participants in Kundu’s study didn’t know what SPF stood for, or how the number was related to UVB rays, most did understand that sunscreens with higher SPF ratings offered more protection against sunburns and skin cancer than sunscreens with lower SPF ratings, Kundu said.

However, what’s still confusing to people is that a high SPF rating doesn’t mean a sunscreen will protect your skin against the ultraviolet A (UVA) rays that cause photoaging and can also lead to skin cancer. (Only 29 percent of study participants knew this.)

So, how can you find a sunscreen that protects you from all the rays that can damage your skin? Look for one labeled “broad spectrum,” Kundu said. Under the U.S. Food and Drug Administration’s current sunscreen labeling guidelines, only products that protect against both UVA and UVB rays can receive the “broad spectrum” label.

In addition to choosing a sunscreen that protects your skin from both kinds of damaging rays, there are a number of other steps you can take to reduce your risk of skin damage from the sun this summer, according to both Kundu and Stein:

• Reapply sunscreen every two hours, or after every dunk in the pool or ocean.
• Limit your exposure to the sun, especially during the middle of the day, when the sun’s rays are strongest.
• If you have to be outside midday, find some shade, like an umbrella or a tree.
• Cover up with long sleeves, pants, a hat and sunglasses whenever possible.

If covering up completely seems too extreme, consider at least wearing a shirt to cover sunburn-prone areas like the chest and shoulders.

“It’s been a long, cold winter, and people are really excited to be outside,” Stein said. “There’s no reason to be a vampire. You just have to do it in such a way that’s a little safer.”

The results of the sunscreen survey were published on June 17 in the Journal of the American Medical Association Dermatology.

Crazy Viral Imprint of Microbes on an 8 year old

Source:- Mashable

Your kid’s hands are filthy cesspools of bacteria. The good news: That bacteria makes for some pretty neat science photography.

Take for example Tasha Sturm, a microbiology lab technician at Cabrillo College, who shared this image of her 8-year-old’s hand-print on a petri plate filled with Tryptic Soy Agar.

Sturm shared the photo on Microbe World, writing in the comments that she’d taken the handprint just after her son returned from playing outdoors.

Several days and multiple rounds of incubation later, her son’s handprint had flowered into large — and strangely beautiful — colonies of staph, micrococcus, yeast, fungi and more.

Sturm tells Mashable that the hand print serves as an example for a microbiology lab class she teaches each semester.

“If I have large plates left over from the previous semester and I remember then I will let my kids do a ‘demo’ for me by making a hand print and bring it into the class to show the students,” she said. “My kids love it, as my son said it’s, ‘Cool!,’ and it is a good teaching tool all the way around.”

She added that her children have been making “hand prints” for the past five years, “and it never seems to get old.”

Behavioral therapy can improve insomnia without drugs

Source:- reuters.com

A new study confirms that cognitive behavioral therapy is an effective option for chronic insomnia, researchers say.

The researchers, who reviewed previously published data, expected that cognitive behavioral therapy (CBT) would be highly effective, said James M. Trauer of the Melbourne Sleep Disorders Centre in Australia, who led the new analysis.

“What surprises us is that there isn’t more awareness of this treatment’s effectiveness and that there haven’t been more attempts to make the treatment more available to patients,” Trauer told Reuters Health by email.

For the review, researchers considered 20 randomized, controlled trials of face-to-face behavioral therapy assessing its effects on overnight sleep for people with chronic insomnia not caused by an underlying medical condition.

Up to 15 percent of people have trouble falling asleep or staying asleep and meet the diagnostic criteria for chronic insomnia, the researchers write, which often also includes impairment of daytime thinking, mood or performance.

The researchers included studies that tested at least three of the five components of cognitive behavioral therapy, including (1) working with a therapist to identify and replace dysfunctional attitudes about sleep, like unrealistic expectations or fear of missing out, (2) instruction in sleep hygiene, (3) limiting time in bed to that spent actually sleeping, (4) controlling sleep stimuli, and (5) relaxation techniques like mindfulness or meditation.

Overall, the 20 studies included more than 1,000 patients. All the studies compared cognitive therapy groups to either a waiting list, an ‘education-only’ group, a sham therapy group or a group receiving placebo pills.

On average, people in the therapy groups reduced the time it takes to fall asleep by 19 minutes after treatment, spent 26 fewer minutes waking up in the night and slept for about seven more minutes per night, the researchers reported in the Annals of Internal Medicine.

This validates existing recommendations that CBT should be the first treatment option for chronic insomnia, Trauer said.

“Medications are associated with side effects and also the risk of tolerance,” he said.

“These are important drawbacks, but the biggest problem with medications is that they don’t get to the core of the problem,” he said. “Psychological treatments aim to understand what is driving the insomnia and reverse these processes, while medications just mask the symptoms.”

The review did not assess more important outcomes, like fatigue, psychological distress and quality of life, Charles M. Morin of Universite Laval in Quebec, Canada, noted in an editorial.

He writes that “a major gap exists between the current state of the science and actual clinical practice.”

Insomnia is often unrecognized and untreated, and when it is treated, it is often with over-the-counter products with unknown risks and benefits or prescription medications with known side effects, Morin writes. “Cognitive behavioral therapy is relatively unfamiliar to and underused by medical practitioners.”

CBT should be appropriate for most people with chronic insomnia, as long as they accept that some hard work is required, but it is not available to all patients, Trauer said.

“Although we do need to train more therapists to be able to deliver the treatment, even this is unlikely to be sufficient to meet the demand, given that around 10 percent of the population (has) chronic insomnia,” he said.

Internet-based treatment and group-based formats may give patients more access to CBT for insomnia, which needs to be tailored to the individual, he said.

More than 1 in 4 U.S. kids exposed to weapons violence

Source:- post-gazette.com

More than 1 in 4 U.S. children are exposed to weapon violence before their 18th birthday, either as victims or witnesses, a large study suggests.

About 1 in 33 kids are directly assaulted during incidents involving guns or knives, according to researchers whose report was published online Monday in the journal Pediatrics.

“Millions of children are being exposed to violence involving weapons, and many of them are victimized by guns and knives, with an elevated risk of trauma and serious injury,” said lead study author Kimberly Mitchell, a scientist at the Crimes Against Children Research Center at the University of New Hampshire.

All told, more than 17.5 million children in the U.S. are witnesses to, or victims of, assaults with weapons — far exceeding the number of kids who have diabetes or cancer. The experiences put them at increased risk for depression, anxiety and other mental health disorders as well as difficulties with school, work and relationships.

Ms. Mitchell and colleagues analyzed data from a national telephone survey of 4,114 children aged 2 to 17 years. Roughly half were at least 10 years old and answered their own questions during the phone interviews with researchers. Caregivers answered questions on behalf of kids under 10.

Slightly more than half of the participants were boys. About 57 percent of the kids in the study were white, while 15 percent were black and 19 percent were Latino.

Many lived with two adults, whether their biological or adoptive parents or stepparents, while about 36 percent of the kids lived with single parents or another caregiver.

Families in the study came from all income levels, with about 62 percent of children living in middle-class households.

Boys, minorities and kids from low-income families or households not headed by two biological or adoptive parents were most likely to be exposed to weapon violence, the study found.

Much of the violence involved objects such as sticks, rocks, bottles, but about 3 percent of children reported exposure to guns and knives.

Gun and knife violence didn’t vary by gender, although older children were more likely to experience it. The odds of being a witness or victim in an attack with these lethal weapons were higher for kids not living with their biological or adoptive parents as well as for kids who carried these weapons themselves or had friends who did.

“This study represents typical American kids at a range of incomes and shows that their exposure to violence is very widespread and common,” said Denise Dowd, a specialist in pediatric emergency medicine at Children’s Mercy Hospitals and Clinics in Kansas City, Mo.

Children who are repeatedly exposed to weapons, whether it’s domestic violence or gangs or bullying or fighting at school, are at risk for particularly troubling outcomes, said Dr. Dowd, who wasn’t involved in the study. These kids can experience what’s known as toxic stress, when traumatic events produce changes in the brain that can lead to other health problems.

Stress sets off alarms in the brain that trigger the nervous system to release hormones to sharpen the senses, tense the muscles, speed up the pulse and deepen breathing. Commonly called a fight-or-flight response, this biological reaction helps people defend themselves in threatening situations.

Routine exposure to stress can lead to immune system problems, heart disease, nervous system complications and mental health disorders, previous research has found.

“When you are exposed to this toxic stress, the fight-or-flight instinct is all you have, whether you’re being attacked by a bear in the woods or your father comes home drunk and screaming at you,” said Dr. Dowd. “These kids can shut down or they can become hypersensitive and ready to fight at the slightest provocation.”

Often, exposure to weapons happens in the home, making it crucial that parents keep guns locked, unloaded and out of reach, she said.

Parents should also be on the lookout for signs that kids may be experiencing violence at school or in the community. Even when children don’t talk about it, they might indicate a potential problem by refusing to go to school, complaining of headaches or stomachaches that don’t appear to have a medical cause.

“The most important thing any parent can do is create a home environment that’s nurturing and supportive,” she said. “And, be attuned to sudden changes in how children act because before they have words for what is going on their bodies will respond.”

Growing hazard of Lyme disease

Source: journalgazette.net

As the days grow steadily warmer and longer, people celebrate spring by venturing outdoors – gardening in the yard, playing in community parks, strolling along wooded trails.

Unfortunately, they’re not alone. The increasingly balmy weather also heralds the return of the dreaded annual tick season.

Officials in regions with consistently high rates of infection are ramping up efforts to make sure residents know how to enjoy the outdoors safely – and what to do if they experience a tick bite or the symptoms of a tick-borne illness.

“There’s a lot of Lyme disease out there, and we don’t have any reason to think that the infection rates and our number of ticks are suddenly going to drop,” said Katherine Feldman, public health veterinarian with the Maryland Department of Health and Mental Hygiene. “We want everyone to be aware of the potential for Lyme infection.”

The illness, which is caused by bacteria that can be transmitted through the bite of an infected black-legged tick, can cause serious heart and nervous system problems if it isn’t promptly diagnosed and treated with antibiotics.

But there are several simple steps people can take to help avoid infection, Feldman said, including dressing in light-colored clothing that will make it easier to see a tick; conducting a thorough check after spending time outside; and showering or bathing soon after any exposure to a possible tick habitat.

As tick populations have continued to spread into new territories – thanks in part to shifting climate patterns and widespread residential development, experts say – Lyme disease has become a mounting problem. In 2013, 95 percent of confirmed Lyme disease cases were reported from 14 states.

So officials want everyone to get up to speed on basic facts about ticks and the illnesses they carry.

Know your ticks

A tick typically must be attached for at least 24 hours before Lyme-causing bacteria is introduced into the human host’s bloodstream.

“Just knowing what kind of tick bit you can help you understand what you’re at risk for,” Feldman said. “Lyme disease is far and away the most common (infection) in Maryland, but there are other diseases you can get from ticks, so we want people to be aware of all tick bites and take measures to keep all ticks off them.”

Lyme disease is most often transmitted through the bite of a nymph – or juvenile – black-legged tick, also known as a deer tick. The tiny insects can be hard to spot, with bodies as small as a freckle or the tip of a pencil.

A recent infection is often associated with a red, irritated rash at the site of the bite. But not everyone gets a rash, experts warn, so it’s important to be aware of other possible symptoms, including fever, headache, fatigue, and muscle or joint pain.

People are most at risk from Lyme infection in areas where rodents, deer and other small animals are easily able to transfer ticks to human hosts, Feldman said. The threat is especially high near waterways (ticks love moisture) and in recently developed areas where tick habitat borders residential communities.

And for those who may have hoped that the recent colder-than-average winters might help – no such luck: Black-legged ticks, native to the upper Northeast, are well-accustomed to the cold.

Diagnosis debate

When it comes to certain facts about Lyme – how to prevent a bite, what to do if you find a tick or exhibit symptoms of infection – there tends to be consensus among scientists, physicians and government officials. But other aspects of Lyme disease, such as how best to diagnose or treat it, are bitterly contested.

The U.S. government, through the Centers for Disease Control and Prevention and the treatment guidelines established by the Infectious Diseases Society of America, takes the position that diagnostic testing is generally reliable, particularly for people who have been infected for some time. A course of antibiotics is given to combat the infection, and experts at the CDC maintain that the vast majority of patients make a full recovery.

For those who experience lingering symptoms, the underlying cause is contested: Some think the problems are caused by a continued immune response to a treated infection, while others say the symptoms may signal an active, ongoing Lyme infection.

It’s a controversy that has consumed many Lyme disease patients, including 15-year-old Sydney Cox, a Loudoun, Virginia, girl who tested positive for Lyme disease in the eighth grade and has struggled to overcome devastating neurological symptoms.

For years she has experienced unrelenting joint pain, headaches and significant cognitive impairments. Her family is raising money to pay for long-term treatment with intravenous antibiotics, a measure that the CDC says is not proven to help Lyme victims and is potentially dangerous.

But Elizabeth Cox, Sydney’s mother, feels the family has little choice.

“It’s worth trying, because I just don’t know what else to do,” she said. “The whole thing is so scary as a parent.”

Brian Fallon, director of the Lyme and Tick-borne Diseases Research Center at Columbia University, said there is a great need for more research and controlled trials to investigate the nature of ongoing Lyme symptoms, which patients often call “chronic Lyme disease” and scientists and medical experts typically refer to as “post-treatment Lyme disease syndrome.”

Research indicates that the use of IV antibiotics can be helpful in some instances and harmful in others, Fallon said.

“But if a person’s life is so profoundly affected (by Lyme) that they can’t function â ¦ then it certainly makes sense to entertain that possibility,” he said. “There are significant risks but also the potential of significant benefits.”

It is a highly contentious and complex debate, he said, and more concrete information is needed to guide effective treatments.

Meanwhile, health officials say they will continue to avoid the controversy wherever possible, focusing instead on the indisputable facts about ticks and early diagnosis.

“There is consensus that prevention is the best thing that we can do,” said David Goodfriend, director of the Loudoun County Health Department in Virginia. “As for people who have been treated and are still having ongoing health problems, I think what we can all agree on is that it would be great if they’d never been infected to begin with.”

Analysis: Mental illness, crime unrelated

Source: mansfieldnewsjournal.com

The recognition of mental illness is on the rise in Richland County, but crime isn’t following, statistics show.

A News Journal analysis of all police reports labeled “mental health” by Richland County Sheriff, Mansfield Police and Ontario Police found that officers encountered individuals with suspected mental illnesses at least 66 more times in 2013 than in 2009.

In 2009, county law enforcement completed 575 mental health reports, down slightly from 2013, where officers reported 641 calls.

Statistics through June 2014 were on track to match or bypass 2013 numbers. Agencies reported 312 calls from January 1, 2014, to June 1, 2014.

Most of those incidents were ones of crisis, meaning officers were asked to check on a person’s wellbeing. When an individual is believed to be a threat to themselves or others, or if they’re not able to take care of their basic needs, officers have the authority to take them to the hospital for an assessment.

Only a few of the incident reports were related to misdemeanor criminal activity, like criminal damaging, assault, theft or shoplifting. (Because law enforcement does not specifically track individuals cited for crimes where mental illness is later determined to be a factor, it’s impossible to get an exact picture.)

In the same time period, crime calls in Richland County have fallen slightly.

Statistics analyzed by Richland County Sheriff’s Office showed violent crime calls decreased 10 percent from 2013 to 2014, and property crime calls decreased 9.97 percent.

Mansfield Police also reported a drop in many property crime calls. Burglaries fell 7.9 percent from 2013 to 2014; robberies and larceny were almost unchanged from 2013. There were zero cases of manslaughter reported in each year.

Arsons also dropped 27.5 percent over the year.

Only two violent crimes saw increases: homicide cases jumped from zero in 2013 to three in 2014, and five more assaults were reported in 2014 than the previous year.

The numbers bolster local mental health advocacy agencies that repeatedly have called for an end to generalizations between mental health and criminal activity. There is no direct connection between the two, stressed Dr. Terry Weston, OhioHealth MedCentral Mansfield Hospital’s vice president of medical affairs.

“They have a mental illness; they need help and there are ways to do that,” Weston said. “They’re not crazy or out of control or helpless. That’s just not the case.”

Typically, mental illness doesn’t discriminate between genders. In Richland County, illnesses affect men and women nearly equally. In 2013, 335 mental health calls involved men, and 306 involved women. Numbers were also relatively close in 2009, when police encountered 231 men and 173 women.

For data and more on topic

Food Safety Officials Probe Reports of Insects in Pre-Packaged Salads

Source: www.chrisd.ca

The Canadian Food Inspection Agency is looking into reports of the presence of Iron Cross Blister beetles in imported leafy vegetables.

The agency says some consumers have reported finding the insects in pre-packaged salads.

There have been no confirmed illnesses or injuries and the agency says it’s rare that fresh produce harbours insects that can pose a threat to consumers.

The Iron Cross Blister beetle is very distinctively coloured, with a bright red head and bright yellow markings on the wings, separated by a black “cross.”

The agency says the insect may release an irritating chemical called “cantharidin” that may cause blisters at the point of contact.

It says if anyone finds the beetle in their produce they should remove it without touching or crushing it.

After the ice bucket challenge: they raised $115m for the fight against ALS. So how did they spend it?

Source: theguardian.com

At the ALS Association (ALSA) headquarters in Washington DC, Carrie Munk vividly remembers the phone call that first alerted her to the ice bucket challenge. “It was the first week of August and I was at an off-site meeting,” says Munk, ALSA’s chief communications officer. “I picked up the phone and it was the executive of our centre in Massachusetts. He said, ‘You all need to be aware that something big is happening.’ So we quickly checked our fundraising figures, and out of nowhere there was about a $50,000 increase on where we’d been the previous year.”

As the impact of what was taking place slowly dawned, puzzlement turned to excitement – and then panic. That week 200 people gathered in Boston’s Copley Square to take the challenge simultaneously. A few days later, Los Angeles followed suit. The donations continued to flood in.

The small initiative that began a month earlier in a Massachusetts living room was rapidly spiralling into a global, social media monster. The friends and family ofPete Frates, a former captain of the Boston College baseball team who was diagnosed with ALS in March 2012, are widely credited with starting it. Frates’ mother, Nancy, recalls scouring the internet in the first few weeks, commenting, Facebook-liking and sharing every challenge video she could find.

Within weeks, Hollywood stars, athletes and even global leaders were joining in the fight against ALS. (The abbreviation for amyotrophic lateral sclerosis, known as motor neurone disease in the UK, has now become much more familiar on this side of the Atlantic.) Barack Obama donated to the cause. YouTube became a battleground for the funniest clips. On 20 August, ALSA received more than $11.5m overnight.

With staff working around the clock to deal with the surge of interest, Munk’s previous experience of working for the American Red Cross kicked in. “The closest thing I could compare it to is a crisis response to a natural disaster,” she says. “Our staff put their normal tasks to one side, and for three weeks all we did was answer emails and phone calls and open mail from people with questions about ALS and the challenge. While we didn’t start the campaign, people were turning to us for information, and we felt a responsibility to help provide that, and to keep the momentum of this incredible effort going.”

By mid-September, when the momentum finally began to subside, the challenge had raised more than $115m for ALSA, and millions more around the world, including £7m for the Motor Neurone Disease (MND) Association in the UK. And while that offered an extraordinary opportunity, it was not without its pitfalls. The story of the attempt to make the most of it is one of good intentions, unintended consequences and hope against the odds.

For those with the disease, hope took hold right away. “I can’t remember exactly when I heard about the challenge – it went viral so quickly,” says Rebecca Kidd, a 54-year-old from Atlanta who was diagnosed with ALS in January 2012. “I first started seeing it trend on Facebook, and then folks in our neighbourhood started getting on board. My 11-year-old son took the challenge on my behalf, and my friends and family all joined in. For me, some of the most moving challenges were the ones done by my son’s friends supporting him. I want to believe the challenge was more than a good thing, a game-changer. I hope we’ll look back on it as a milestone in the battle for a cure, the turning point in both raising awareness and the funds necessary to finally find answers.”

Meanwhile, ALSA’s executives faced the challenge of handling a windfall amounting to almost five times the charity’s typical annual revenue, amid an increasing clamour for information on how they were planning to spend it.

This week, a clearer indication of the results emerged: the breakdown of how ALSA has spent the money. Anyone who feared that the organisation would be funnelling all its funds into further attempts to go viral would have been relieved: around 70% of the money is being spent on research, and 20% on patient and community service. The remainder is split between fundraising, publicity and administration costs. The ice bucket challenge has not driven the organisation to take leave of its senses.

And that money was urgently needed. One of the initial decisions made by ALSA was to repair the gaping hole in care funding left by the 2008 financial crisis. ALSA runs 48 certified clinics across the US, which provide therapies ranging from respiratory to psychological, help with equipment such as specialised wheelchairs, and palliative care for those in the final stages of the disease.

On average, ALS affects six people in every 100,000. Life expectancy typically ranges from three to five years. Kidd has a slower progression of the disease, but like all patients, she knows the inevitable is coming. “My own onset began in my right toes, and has been progressing,” she says. “For now, my speech is still very good, as is my swallowing. But over the past three years, I’ve watched this disease rob people of their ability to move, talk, swallow and ultimately breathe. There were 14 people who got the diagnosis on the same day as me. 80% of us are probably gone.”

The only medication currently available to patients is Rilutek, a medication discovered in the 1940s that increases survival by an extra two to three months. “It’s easy to despair,” says Ted Harada, a 41-year-old father of three, who has ALS. “One day a doctor tells you: ‘You have ALS. There’s nothing you could have done to avoid getting it. And I’m very sorry, but I don’t have a cure or a treatment.’ And there’s nothing you can do. As a cancer patient, you can try chemotherapy or surgery. With ALS, you want to fight it, but you’re told there’s no fight to be had.”

Read more at http://www.theguardian.com/society/2015/may/30/als-after-the-ice-bucket-challenge