FESTIVUS FOR THE REST OF US IN 2015

The Winter Holiday season, in particular Christmas  are portrayed in our society as the happiest time of the year, an opportunity to be joyful and grateful with family, friends and colleagues.

It has always seemed to me that this time of the year highlights the hypocrisy of Society by designating the period for everyone to be joyful, compassionate toward those less fortunate, being friendly, courteous, and doing "all the right" choreographed things in their interactions with others.

Suddenly sick children in hospitals are showered with free gifts by strangers, magical Santa Claus appears to provide needy children with toys, the poor are given free warm clothes, food, and treated as human beings.

What about the rest of the year, when most of these very same people who are still suffering, become invisible, ignored by most others, where does the kindness they received during the Holiday Season go? It simply disappears, these humans no longer are worthy of being recognized.

According to the National Institute of Health Christmas/Holiday Season is the time of year that people experience a high incidence of depression.

Hospitals and police forces report high incidences of suicide and attempted suicide.

Psychiatrists, Psychologists, Social Workers and other mental health professionals report a significant increase in patients complaining about depression.

One North American survey reported that 45% of respondents dreaded the season.

It appears to have more to do with unrealistic expectations and excessive self-reflection for many people.

For some people, they get depressed at this time of the year and even angry because of the extreme commercialization with the focus on gifts and the emphasis on "perfect" social activities.

Others get depressed because it appears to be a trigger to engage in excessive self-reflection and rumination about the inadequacies of life (and creates a "victim" mentality) in comparison with other people who seem to have more and do more.

Still others become anxious because of the pressure (both commercial and self-induced) to spend a lot of money on gifts and incur increasing debt.

Some report that they dread Christmas because of the expectations for social gatherings with family, friends and acquaintances that they'd rather not spend time with.

And finally, many people feel very lonely at Christmas, because they have suffered the loss of loved ones, are distant from family members, or live alone.

To counter all of this, I suggest that we all look back to the truly positive holiday spirit of "Happy Festivus" which is the traditional greeting of Festivus, a holiday featured in "The Strike" episode of The Seinfeld Televison show aired on December 18, 1997.

According to the Seinfeld model, Festivus is celebrated each year on December 23rd. 

However many people celebrate it other times in December, and even at other times throughout the year.

The slogan of Festivus is "A Festivus for the rest of us!"

The usual holiday tradition of a tree is replaced by an unadorned aluminum pole, which is in direct contrast to normal holiday materialism.

Those attending Festivus may also participate in the "Airing of Grievances" which is an opportunity to tell others how they have disappointed you in the past year, followed by a Festivus dinner, and then completed by the "Feats of Strength" where the head of the household must be pinned.

The Festivus celebration includes four main components:

The Festivus Pole: The tradition begins with an aluminum pole, which is used for its "very high strength-to-weight ratio."

During Festivus, the unadorned Festivus Pole is displayed.

The pole was chosen apparently in opposition to the commercialization of highly decorated Christmas trees, because it is "very low-maintenance," and also because the holiday's patron, Frank Costanza, "finds tinsel distracting."

The Airing of Grievances: At the beginning of the Festivus dinner, each participant tells friends and family of all the instances where they disappointed him or her that year.

As quoted from Frank Costanza: "I've got a lot of problems with you people, and now you're going to hear about it!"

Festivus Dinner: A celebratory dinner is shown on the evening of Festivus prior to the Feats of Strength. In the episode the meal appeared to be meat loaf or spaghetti in a red sauce.

The Feats of Strength: After the dinner, the head of the household tests his or her strength against one participant of their choosing.

Festivus is not considered over until the head of the family has been pinned. However, a participant may be allowed to decline to attempt to pin the head of the household only if they have something better to do instead.

Set aside today,  the day of December 23rd or another day this month and break out the meat loaf, because Festivus is once again upon us! 

THERE IS NO WORD FOR A PARENT THAT LOSES A CHILD. A NIGHTMARE OF STEVEN AND MYSELF.

A wife who loses a husband is called a widow. 

A husband who loses a wife is called a widower. 

A child who loses his parents is called an orphan. 

There is no word for a parent who loses a child. That’s how awful the loss is.   
(Jay Neugeboren  "An Orphan’s Tale",1976).

The death of a child is every parent’s worst fear and has been rendered to be “a catastrophic stressor unlike any other” by the "Psychiatric Diagnostic and Statistical Manual". 

Grief is not an illness to be treated or cured.

Grief is a response to a painful reality that one’s world is forever altered, and will never be the same. 

Absorbing this loss, and trying to adapt to the changes it unleashes, has its own unique course for every person, and will not be stilled or stopped by quick fixes or simple solutions.

And so, it was that kind of night again.

A nightmare of Steven and myself .

He was a teenager and cheerfully explaining to me how his grades in School were so excellent.

I could barely see his face, but Steven's voice, his mannerisms, all of  him were clear, talking to me, vividly, truly it appeared to be in real life.

I remember thinking, "how can he have grades in school if he is dead, how do I tell him that he is dead,  how did he get to be back in school again", and my feeling completely confused about what was happening.

I struggled, agonized to see more, hear more of Steven, but what I was experiencing became slower and slower, crawling, almost frozen in time.

I tried to see if I was awake or deep within some nightmare, it all had seemed so life like, so real, but nothing moved for what seemed like a long time.

Suddenly I awoke, within a nano second, a painful burning sense of reality struck me full force.

Steven is dead, and dead means forever gone.

HAPPINESS CAN'T BE BOUGHT. IT"S ELUSIVE, IT"S AWESOME LOOKING, INSIDE AND OUTSIDE YOUR BRAIN.

This is what happiness really looks like: Molecules of the motor protein myosin drag a ball of endorphins along an actin filament into the inner part of the brain's parietal cortex, which produces feelings of happiness.  They are "strutting' as they "walk", seemingly aware of their impressive powers.

                      
Below is also myosin walking along an actin filament. This is a bit harder to see because these are real electron microscope images pasted together into a sequence.

This single molecule of myosin is "walking" because of an oscillating chemical reaction causing the molecule to rotate, attach, detach its other "foot", rotate again, attach, repeat. 

This is one little protein doing one little tiny thing, inside one tiny little cell, somewhere in your body. 

This is only one kind of protein performing one kind of action in one cell in your body. 

There are things like this, there are enzymes, there are all kinds of other mechanisms doing little "jobs" like this within each cell in your body. 

We're talking large numbers of things like this happening all the time in every cell, billions or trillions of actions. That's a lot of shit happening.

Perhaps, due to an error made by one of these little proteins at conception, or a change in your metabolism, your body doesn't "know" how to produce this or other molecules. 

Perhaps your body makes a little bit more or less of this myosin than another person
  
When you begin to realize the utter complexity of what's going on in the body, you can understand it isn't that easy to feel happiness, let alone actually finding happiness.

Happiness cannot be traveled to, owned, earned, worn or consumed.

You can buy an education, but happiness comes separately. 

You can buy a new car or you can buy a new house, but happiness comes separately. 

You can go shopping and buy everything you want, but happiness comes separately. 

You can get married or you can get divorced, but happiness comes separately. 

You can make a lot of money, but happiness comes separately. 

You can win the Lottery, but happiness comes separately.

You think you will be happy when you buy the new car or the larger house. And you will, but not for very long. 

Money can buy you a new car or a larger house. 

Money can buy you many things, but money can't buy you happiness.

Happiness is sold separately and it cannot be bought with money.

Money buys things, and happiness is not a "thing." Happiness is an inner state of mind.

We all want happiness. People want to be happy. This is the basic reason we do everything that we do.

We may think we are trying to get things, so we can feel more secure, be more loved or maybe we feel more important. 

The truth is that we do everything we do to derive happiness. 

If we learned that the main reason we desire the things we want are to experience happiness, we would value happiness more than just "things."

Happiness is probably the most important feeling that a human being can attain in their life. It is also sometimes the most elusive of all emotions.

We know the pleasurable feelings inside when we are happy but now we know what happiness actually look like in our brain.

Endorphins are chemicals that are able to cross through the gaps between neurons in order to pass along a message from one to the next. There are many different kinds, and much remains to be learned about their different purposes and functions.

One thing is known for certain about endorphins: their ability to make you feel oh-so-good. When your body is subjected to certain stimuli like sex, food or pain, your hypothalamus calls for endorphins, and the cells throughout your body that contain them heed the call. 

When endorphins lock into special receptor cells, called opioid receptors, because opiates also fit them, they block the transmission of pain signals and also produce a euphoric feeling, exactly like opiates.

Endorphins act as both a painkiller and as the pay off for your body's reward system. When you hurt yourself you may get a big dose of endorphins to ease the pain. 

You may also get an endorphin surge from talking to a stranger, eating chocolate, eating a satisfying meal, especially a sweet dessert, or being exposed to ultraviolet light. 

Everyone has different amounts of endorphins, and what may trigger an endorphin rush for one person could very well produce a dud for someone else.

Are you less happy than your parents were at the same age? 

It may not be all in your head. Researchers led by San Diego State University professor Jean M. Twenge found adults over age 30 are not as happy as they used to be, but teens and young adults are happier than ever.

Researchers,including Ryne A. Sherman of Florida Atlantic University and Sonja Lyubomirsky of University of California, Riverside, analyzed data from four nationally representative samples of 1.3 million Americans ages 13 to 96 taken from 1972 to 2014.

They found that after 2010, the age advantage for happiness found in prior research vanished. There is no longer a positive correlation between age and happiness among adults, and adults older than 30 are no longer significantly happier than those ages 18 to 29.

"Our current culture of pervasive technology, attention-seeking, and fleeting relationships is exciting and stimulating for teens and young adults, but may not provide the stability and sense of community that mature adults require," said Twenge, who is also the author of "Generation Me."

Data showed that 38 percent of adults older than 30 said they were "very happy" in the early 1970s, which shrunk to 32 percent in the 2010s. Twenty-eight percent of adults ages 18 to 29 said they were "very happy" in the early 1970s, versus 30 percent in the 2010s.

Over the same time, teens' happiness increased: 19 percent of 12th graders said they were "very happy" in the late 1970s, versus 23 percent in the 2010s.

"American culture has increasingly emphasized high expectations and following your dreams,things that feel good when you're young," Twenge said. 

"However, the average mature adult has realized that their dreams might not be fulfilled, and less happiness is the inevitable result. Mature adults in previous eras might not have expected so much, but expectations are now so high they can't be met."

That drop in happiness occurred for both men and women, said Twenge.

 "A previous study in 2008 got quite a bit of attention when it found that women's happiness had declined relative to men's. 

We now find declines in both men's and women's happiness, especially after 2010."

Sure we can feed ourselves sweets, ice cream, good food, drugs, alcohol, or exercise and they will temporarily create happiness by pushing the myosin onto stimulating the endorphins.

If you can find a way to bottle consistent happiness, you will be the "richest" person in the world.

For now, eat your chocolate, choose your favorite flavors of ice cream, find someone you can love, do whatever it takes, and if you are lucky enough, you will feel happy some of the time.

UPDATED DECEMBER 6, 2015-JENNIFER MCNARY-DUCHENNE'S MUSCULAR DYSTROPHY-MOTHER OF MAX AND AUSTIN

                                     UPDATED DECEMBER 6, 2015

They call themselves the “fierce moms:” women who formed an alliance out of desperation and need. All have children with Duchenne muscular dystrophy, a rare and fatal disease. And for nearly four years they have single-mindedly lobbied politicians and federal regulators to speed up approval of experimental medicines.

“I don’t think we’ve seen anything like this since the days of AIDS and HIV activism,” said Ira Loss, who tracks the pharmaceutical industry for Washington Analysis, a consulting firm.

The fierce moms and other parents have notched some key victories: A Food and Drug Administration panel of experts will hold a pair of widely anticipated meetings to review two drugs designed to the slow the muscle wasting associated with DMD. The first occurs next Tuesday when a treatment from BioMarin Pharmaceutical will be considered. The other takes place in January to examine a drug developed by Sarepta Therapeutics.

But their victories have also raised uncomfortable questions.

Patients suffering from an array of rare conditions are now putting huge pressure on the FDA, hoping to shape deliberations about the risks and benefits of new medicines. That worries some experts who fear that emotional pleas from patients — or their mothers — could compromise scientific judgment.

KAYANA SZYMCZAK FOR STAT

Austin Leclaire, 16, makes his way through his apartment complex to the dog park, in Pembroke, Mass.

“The days of a controlled, experts-only system are fast ending,” said Daniel Sarewitz, a professor of science and society at Arizona State University. “On the whole, this is not a bad thing. But one can imagine things might get rushed through the regulatory process without adequate time to see all of the risks.”

Parents whose children have DMD, however, will tell you that there is no time to waste.

A DEVASTATING DISEASE

DMD is caused by an error in a gene that produces a protein called dystrophin. The gene is found on the X chromosome, so the disease primarily affects boys — up to one in every 3,500 inherit the mutation, causing about 20,000 new cases each year worldwide.

Without dystrophin, muscle fibers degenerate and are gradually replaced by fat and connective tissue until voluntary movement becomes impossible. By their teens, boys with DMD are usually confined to wheelchairs. Later, they are unable to breathe independently, and their life expectancy generally doesn’t run past 25.

The disease has no cure, and there are no drugs available to even slow the loss of muscle strength. For decades, there was little focus on drug development, as pharmaceutical companies focused primarily on chasing blockbusters for treating common ailments, such as diabetes, while ignoring rare disorders. But that all changed thanks to a confluence of recent events.

Notably, scientific advances recently identified ways to thwart the progression of DMD. The drugs up for review — drisapersen from BioMarin and eteplirsen from Sarepta — both rely on a technique known as exon skipping. The treatments coax the cell’s internal machinery to skip over sections of faulty genetic code. This in turn helps create a partially functional dystrophin protein. The goal is to create enough dystrophin so boys can regain mobility, or at least to slow the pace of their decline. (These two drugs, however, target only one of many coding segments of the dystrophin gene, and thus may help just the 13 percent of the DMD patient population who have mutations in this region).

But perhaps the biggest boost to drug development for DMD came on the regulatory front, when in 2012 President Obama signed into law the Food and Drug Administration Safety and Innovation Act. This allowed the FDA to accelerate approval when a drug satisfies an unmet medical need for a serious condition, and it empowered agency officials to rely on surrogate markers to green-light these kinds of drugs, rather than requiring evidence of actual clinical improvement. For Duchenne, a proxy could be increased dystrophin production.

“By doing that, Congress opened the door for patient involvement,” said Pat Furlong, chief executive of Parent Project Muscular Dystrophy, the largest DMD-focused nonprofit organization in the United States.

Founded in 1994, the PPMD more closely resembles a well-oiled advocacy machine than a grassroots collective. Thanks to its fundraising prowess, the organization has doled out grants totaling more than $45 million for DMD research to scientists and physicians. And its $6 million annual budget allows it to hire lobbyists and policy experts to woo lawmakers.

So it was not surprising that Furlong and her organization capably jumped through the door opened by Congress. With help from a bevy of scientific experts and industry representatives, PPMD crafted a set of guidelines in 2014 for developing drugs for DMD. The FDA even used the group’s regulatory guidance — the first-ever from a rare-disease patient organization — as a blueprint for its own draft recommendations, which were published this past June.

“We’ve met with numerous groups representing many different diseases, but they did something unique,” said Dr. Janet Woodcock, the FDA official who oversees drug approvals. “They were able to bring a whole community together.”

Still, even patient advocacy couldn’t always overcome the realities of drug development.

NO CAKEWALK

Consider eteplirsen, the drug being evaluated by the FDA in January. In 2011, the drug’s sponsor, Sarepta Therapeutics of Cambridge, Mass., was running out of money, and the company gambled it all on a very small study of just 12 young boys with DMD. The hope was that the boys given eteplirsen would show improvement in a six-minute walking test, a standard measure of physical function. Positive results could then be used to seek FDA approval and to raise funds for further drug development.

Jenn McNary, a “fierce mom” with two teenage boys with DMD, enrolled her younger son, Max, in the Sarepta trial. His mobility had been declining. Within a year of starting treatment, he was running with other children. During a recent afternoon in the family’s home on the south shore of Boston, Max, now 13, darted about the living room as he searched for a game to play.

KAYANA SZYMCZAK FOR STAT

Max Leclaire, 13, relaxes at home in his apartment.

After Max visibly improved, McNary also wanted to give the drug to her older son, Austin, but he hadn’t qualified for the same study because he was no longer ambulatory, which meant he couldn’t take a walking test. McNary figured her best chance of getting the drug for Austin, now 16, was to push the FDA to accept the 12-person trial as valid evidence for an accelerated approval.

“Austin was declining at a typical rate,” said McNary, who now works for the Jett Foundation, a nonprofit devoted to DMD awareness and research. “Meanwhile, I’m watching his brother get better on this drug and I just felt utterly hopeless.”

McNary teamed up with Sarepta officials, who announced in 2012 that the drug displayed two benefits in the 12-person trial. The first was that boys given eteplirsen for about a year could travel, on average, 220 feet further during the six-minute walking test than other boys who were given a placebo for 5.5 months before being switched to the Sarepta drug.

The other benefit, according to the published study data, was that eteplirsen increased the amount of muscle fibers containing the dystrophin protein by about 50 percent after a year of treatment. Sarepta has always argued this change in the surrogate marker should be seen as a welcome sign that its treatment can eventually restore mobility, although it has yet to prove this link.

But convincing the FDA to accept this data, or even the walking test results from such a small study, as grounds for market approval is easier said than done. “Any time you’re the first with FDA to see how it interprets legislation, they get nervous,” said Chris Garabedian, who led Sarepta until earlier this year. “We knew this would be a challenge.”

Initially, the FDA encouraged Sarepta to submit its limited trial data for review. But in late 2013, a bomb dropped: A 186-person trial that was testing drisapersen, the competing drug then being developed by Prosensa Therapeutics and its partner GlaxoSmithKline, failed. The drug did not produce a meaningful difference in a six-minute walking test compared with boys who were on a placebo for close to a year.

Listen to the Signal podcast: For boys with Duchenne, and two drug companies, a moment of shared hope

Glaxo ended its partnership with Prosensa, which was left to fund further development on its own. And FDA officials reversed course and told Sarepta its small trial was insufficient for regulatory submission. The chain of events was a one-two punch to families affected by DMD. Suddenly, two promising drugs held less potential.

“It makes me feel kind of mad,” said Austin Leclaire, McNary’s son, as he sat in his wheelchair and held one of his dogs in his lap. Austin eventually managed to get eteplirsen in a safety trial started last year for boys with advanced-stage DMD, but the frustration his family experienced at the time is still palpable. “The reason the FDA is there is to help people and to make sure they’re safe. But they got in the way.”

THE $840 MILLION GAMBLE

For months, the mood in the DMD patient community was grim. But in November 2014, BioMarin, a drug company in California that specializes in rare diseases, bought Prosensa for $680 million upfront, with the possibility of an additional $160 million if drisapersen gains approval.

Clearly, this was a gambit. But after Glaxo walked away, Prosensa mined its study data and found its drug appeared to be effective in younger patients if given over a longer period of time. BioMarin, drisapersen’s new owner, believed it could convince the FDA to review the drug on the basis of this subgroup analysis. (The company declined to comment for this story).

By then, the FDA was more willing to consider formal reviews for both DMD drugs. Agency officials recognized an opportunity to use a platform technology — in this case, exon skipping — to develop a new category of drugs. And patient groups had made their mark by pulling heartstrings, lobbying aggressively, and working with the agency on ways to advance drug development.

“There’s been an evolution in the four years I’ve been working on this,” said Ed Kaye, who had been chief medical officer at Sarepta and succeeded Garabedian as interim CEO in April of this year. “You had what was a fairly conservative FDA going head on with a very aggressive and liberal patient group. But there’s been a tempering on both sides. Patient voices were heard and patients learned about the regulatory view.”

KAYANA SZYMCZAK FOR STAT

Jenn McNary and her children look through a box of toys in their apartment. Austin and Max have Duchenne muscular dystrophy, Norah and James do not.

Neither eteplirsen or drisapersen is a shoe-in for approval, though. “Given the disease and the pressure FDA is under, they want to do a panel and show the world there is transparency,” said Simos Simeonidis, an analyst at RBC Capital Markets. “But this is not a slam dunk one way or the other.”

A key to agency thinking is likely to emerge in briefing documents that will be released prior to the BioMarin panel meeting next week. And a wild card in the approval process may turn out to be the patient groups.

Many parents are planning to attend the meetings next week and in January. Some are concerned that the FDA may eventually approve one drug but not the other. This could prove problematic for some families, because each drug maker is already studying other experimental agents that target different exons. If an FDA panel favors one medicine over another, parents fear this would cause setbacks for entire pipelines. So a very vocal outpouring is expected.

Patient groups are well-aware that the FDA is susceptible to patient outcries. In August, for instance, the agency approved Addyi, a drug to combat female sexual dysfunction, despite side effect issues and limited effectiveness. The approval followed sustained public pressure on the FDA. So the sight of youngsters with limited life spans in wheelchairs may tip agency officials and advisers toward approval.

At least that is what the parent groups are hoping.

“Ultimately, we want approval for all drugs,” McNary said. “I don’t just represent my kids. There are other kids waiting for one drug or the other.”_______________________________________________________________

I I I Received the following email below 

today from Jennifer Mcnary (See Below). 

I wrote a ( CLICK HERE TO READ) 

previous story on this Blog dated

January 5, 2013 that told of her battle 

on behalf of her two sons. 

Some potentially positive events 

have subsequently taken place and 

Jennifer as explained in her e-mail. 

I wish her children all of the best in 

receiving the life sustaining care 

that they deserve.

Only one of my sons had access to a  life-changing drug while his brother  with the same disease got sicker.  Now the drug could have FDA approval  as soon as next year!

Jerry -- I wrote to you last December telling you about my two sons who were both born with life-threatening Duchenne's Muscular Dystrophy. But only one of my sons, Max, had access to an experimental treatment that was drastically improving his life while his brother Austin got sicker.  I could not be happier to  announce that just last week  the drug company decided to  file for approval of the "miracle drug" Eteplirsen  after promising talks with  the FDA!  This means that the drug  could be available as soon  as next year, and both my sons  will soon have a chance at living  a better and longer life. The petition you signed helped the drug garner unprecedented attention from the FDA. I thought I would have to wait for years for both of my sons to have access to this life-changing drugand stand by helplessly as one of my sons thrived while the other suffered silently. But thanks to you, all children  with Duchenne's will be more likely  to have access to this breakthrough treatment  as early as next year. Austin wants supporters like you to know that our work isn't done yet and that he'll be happy when he is sitting down at the doctor's office to receive his first treatment. Max hopes that his brother Austin will soon be stronger like he is.  I'll be keeping up the positive  pressureon the FDA knowing  that I have over 180,000 people  standing behind me.  Thank you so much for your help, this couldn't have happened without you.  Jennifer McNary Saxtons River, Vermont

 -----------------------------------------------------------------------------------

SATURDAY, JANUARY 5, 2013

HELP SIGN PETITION FOR JENNIFER MCNARY MOTHER OF MAX AND AUSTIN

I received an e-mail below from Jennifer McNary Mother of Max and Austin. Please take a minute of your time and sign her worthy petition to the FDA. These are the "small" things that each of us can do to make a difference in the lives of others who need our help, in this case a simple signature in their support to keep her kids alive.

SIGN Jennifer's Petition by clicking on this sentence. 

Both of my sons have the same debilitating disease  -- Duchenne Muscular Dystrophy -- that's kept them dependent on wheelchairs to get around.But now only one of my sons has access to a "miracle drug" that is saving his life.

Max was fortunate enough to take part in a study of a breakthrough medication, and now he can walk on his own for longer than he ever could. But Austin wasn't as lucky. 

Without access to this miracle drug, I watch Austin suffer silently as his brother thrives. The FDA has the power to make this drug available to kids like Austin by putting it through the "accelerated approval" program. It could otherwise take years for this important drug to be available to kids like Austin, denying him the same chance as his brother at a better and longer life.

I started a petition on Change.org asking the FDA to accelerate the approval of Eteplirsen, Max's miracle drug, so both of my sons can have a chance at stopping the crippling effects of Duchenne Muscular Dystrophy. Please sign my petition here.

Duchenne's is a disease that causes loss of muscle, to the point where children stop walking and eventually cannot breathe on their own. It is a slow death sentence with no effective treatment available. Watching Max make progress with this medication has been nothing short of a miracle, but bittersweet -- Austin grows steadily weaker with each passing day. 

Eteplirsen has helped one of my sons accomplish what I never believed possible. And this year, a law was passed that allows the Food and Drug Administration (FDA) to expedite the approval of experimental medications that have been proven to work.

The company that produces Eteplirsen is going to officially ask the FDA soon for accelerated approval because of its miraculous trial results. I am doing everything I can to make sure the FDA knows how crucial this drug is to the survival of my sons. But they need to know that the public supports an accelerated approval process too -- and since they have the power to act, your signature will add the pressure they need to move quickly.

Click here to sign my petition asking the Food and Drug Administration to place Eteplirsen, a miracle medication for children with Duchenne Muscular Dystrophy, on accelerated approval so that my son Austin and other children who need this life-changing drug can have access to it.

Thank you for your help.

Jennifer McNary
Mother of Max and Austin
Saxtons River, Vermont