It’s Blogging Week here at Cristian Mihai blog (yeah, I don’t have a fancy name for my blog). We’ll talk about blogging, different tools that make blogging easier, and other stuff. The other stuff is mostly related to some of the do’s and don’t of blogging, what works and what doesn’t. Everything you’re about to read […]

via The 7 Golden Rules of Blogging — Cristian Mihai

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Education and Philosphy

All who have meditated on the art of governing mankind have been convinced that the fate of empires depends on the education of youth~ Aristotle 

BY BARBARA BAPTISTE

Abstract

Plato argued in the Republic that intellectual pleasure is the best kind of pleasure.[1] However, the New World’s view on education stemmed from Bentham’s beliefs—seized upon by England’s Victorian industrialists[2]—of laissez-faire.[3] It wasn’t until the last quarter of the 19th century that most of the standards—which would characterize contemporary American education—came to life, and that education for every citizen needed to be actively pursued for usefulness in furthering the goals of the nation.[4] With this goal-oriented premise in mind, I will attempt to prove/disprove the fallacy with which our forefathers began to incorporate “with liberty and justice for all” as the basis for education in America, analyzing the origin of its roots in England. This paper shall present the case for how “utilitarianism” is the foundation of the Equal Rights movement as it pertains to education in America and the cultural evolution of its citizens’ mindsets; i.e., the Reconstruction Amendments[5], segregation, massive resistance, and the correlation of landmark events in education, which precipitated the Civil Rights[6] Act of 1964. In today’s world, is our education system based on Utilitarianism?

In his prize-winning, Anti-intellectualism in American Life,[7] Richard Hofstadter[8] set out to trace the social movements that altered the role of intellect in our society from a virtue to a vice. In so doing, he explored questions regarding the purpose of education and whether the democratization of education altered that purpose and reshaped its form. In considering the historic tension between access to education and excellence in education, Hofstadter argued that both anti-intellectualism and utilitarianism were consequences, in part, of the democratization of knowledge. Anti-intellectualism and utilitarianism were functions of our American cultural heritage, not necessarily of democracy. Hofstadter came to recognize the connection between utilitarianism and anti-intellectualism as his work in the history of education evolved. His initial concern with the role of the university and the intellectual in society developed into a powerful critique of the present purpose of education and the state of public education in the United States.[9] These themes, historically embedded in America’s fabric, are an outcome of her colonial European and evangelical Protestant heritage.

Charles Dickens’ Hard Times[10] was written in the middle of an era which prided itself on social, economic, and scientific achievements. The book deals with the enormous changes in British society caused by the Industrial Revolution which finally was forced to recognize the importance of education.

The first system to guarantee education for all students in England did not appear until 1870[11]–1892 until free education was put into law.[12] At best, the law allowed for these children of lower class families to become clerks or bookkeepers. The standard for education was quite low, carrying industrialist and utilitarian undertones—the only requirement being that a student find the sum of a “practice bill of parcels” in order to judge how “useful” curriculum was shaped by commerce and business.

Formulated by Jeremy Bentham and his followers in the late 18th and early 19th centuries, utilitarianism was one of the first rational and systematic attempts to address the vast social, economic, and cultural problems caused by the impact of the Industrial Revolution on British society. Bentham’s philosophy was based on the belief that human institutions should be useful by providing for “the greatest happiness of the greatest number.” In defining this greatest happiness or good, Bentham adopted what he called a “moral arithmetic,” evaluating each human action according to an actual formula, which balanced units of pleasure with units of pain. For Bentham, good resulted when pleasure—defined by each individual’s enlightened self-interest—predominated.[13]

The basis for education in England—consequently the basis for Education in the New World—is exceptionally well stated in Dickens’ Hard Times. He allies himself with John Stuart Mills’ specific objections to Bentham’s educational philosophy, emphasizing the disastrous implications of such an educational philosophy for individuals of intelligence and sensitivity, and argues against such narrow self interest.[14] It is from these close-minded values—only allowing for education to produce monetary results—that America’s educational system evolved, and in part exists today.

Paralleling England, until the 1840s, the education system in the United States was highly localized and available only to wealthy people. Reformers who wanted all children to gain the benefits of education opposed this premise. Prominent among them were Horace Mann in Massachusetts and Henry Barnard in Connecticut. The common-school reformers argued for the case on the belief that common schooling could create good citizens, unite society and prevent crime and poverty—to better society, not the pleasure and/or benefits of knowledge and learning for itself. As a result of their efforts, free public education at the elementary level was available for all American children by the end of the 19th Century. Massachusetts passed the first compulsory school attendance laws in 1852, followed by New York in 1853. By 1918 all states had passed laws requiring children to attend at least elementary school.[15] The caveat to this was that “all” children did not include Negro children.

Beginning with Lincoln’s Gettysburg Address, through the Reconstruction Amendments, 13th, 14th, and 15th it was stipulated that there should be equal education for all, including Blacks. This was circumvented by establishing “segregation.” It wasn’t until 1950 when a Supreme Court ordered a Black student to enter the University of Texas Law School[16] that it began to change, followed in 1954 with the unanimous decision by Earl Warren’s Supreme Court Justices[17] ruling that segregation in public schools was “inherently unequal” and thus unconstitutional.[18]

These landmark cases laid the foundation for the Civil Rights movement and success with the NAACP’s totalitarianism and Martin Luther King’s Deontological preferences. One of the major results was education for all being much more accessible to Blacks. Today this is clearly evidenced by the presence of a Black president and a First Lady[19] whose goal it is to further education for all, not only to strengthen productivity with totalitarian principles of the greatest good, but also with deontological results of a pleasurable pursuit of knowledge itself. This declaration would have been unacceptable a mere fifty years ago.

Deontological ethics is strongest in many of the areas where Utilitarianism is weakest. In an ethics of duty, the ends can never justify the means.[20]  Is today’s society based on utilitarianism? People are working longer hours, are more stressed and, less happy—rich and poor alike. Therefore, if most people are less happy, how can it be Utilitarianism—i.e., resulting in the greatest happiness for the greatest number of people?

 It has always seemed strange to me

that in our endless discussions about education,

so little stress is laid on the pleasure

of becoming an educated person,

the enormous interest it adds to life.

To be able to be caught up into the world of thought—

that is to be educated. ~Edith Hamilton  [21]

Referemces

[1] http://educationandliberty.com/2009/02/10/mill%E2%80%99s-utilitarianism-misunderstood/
[2] http://www.tcr.org/tcr/essays/EPrize_Bentham.pdf Victorian Lessons: Education and utilitarianism
[3] Laissez-faire – theory/system of government that upholds the autonomous character of the economic order http://dictionary.reference.com/browse/laissez%20faire
[4] The History of Education in America; http://www.chesapeake.edu/Library/EDU_101/eduhist.asp
[5] Thirteenth, Fourteenth, and Fifteenth amendments to the United States Constitution
[6] The term civil rights involves the rights guaranteed to U.S. citizens and residents by legislation and by the Constitution. http://legal-dictionary.thefreedictionary.com/Civil+Rights
[7] Copyright © 1962, 1963 by Richard Hofstadter; Published by Alfred A. Knopf, Inc. & Random House, Inc.
[8] American historian and Professor of American History at Columbia University. leading public intellectual of the 1950s
[9] http://www.historycooperative.org/journals/ht/34.3/desimone.html
[10] Dickens wrote Hard Times in 1854, England
[11] Forster’s Education Act http://pa.oxfordjournals.org/cgi/reprint/V/1/26.pdf
[12] Education and utilitarianism http://www.tcr.org/tcr/essays/EPrize_Bentham.pdf
[13] ©1999, The Concord Review, Inc., Ralph Waldo Emerson Prize 2001 – Patrick Bradley,  Victorian Lessons:  Utilitarianism and Education in Bentham, Mill, and Dickens
[14] ©1999, The Concord Review, Inc., Ralph Waldo Emerson Prize 2001 – Patrick Bradley                Victorian Lessons:  Utilitarianism and Education in Bentham, Mill, and Dickens
[15] http://www.servintfree.net/ ~aidmn-ejournal/publications/2001-11/PublicEducationInTheUnitedStates.html
[16] Sweatt v. Painter – American Pageant; Copyright ©2008, 7th edition, Houghton Miflin
[17] Brown v. Board of Education—American Pageant; Copyright ©2008, 7th edition, Houghton Miflin
[18] overturned earlier rulings going back to Plessy v. Ferguson in 1896
[19] Barrack Obama – Elected 2008—  44th President of the United States; Michelle Obama—First Lady
[20] http://webs.wofford.edu/kaycd/ethics/deon.htm)
[21] (1867–1963) American educator and author who was “recognized as the greatest woman Classicist”. The Greek Way, “the calm lucidity of the Greek mind” and “that the great thinkers of Athens; http://www.distinguishedwomen.com/biographies/hamilton-e

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My Family Story

by BARBARA BAPTISTE

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   1999

The Crowley’s Journey

ImageMay of 1997 found me in Cambridge, Massachusetts on a beautifully sun-filled day.  It was the perfect backdrop for the bright young man, John Crowley, to step up to the podium and deliver the Class Day speech at Harvard Business School.   John’s entire family—along with his wife, Aileen; 2½ year old son, John Jr.; and six month old daughter, Megan—listened as he began. . . .

“In time, we will all acquire a certain amount of responsibility and power.    I encourage each of us to use that power wisely but use it often!                    Use it to fight racism, promote the entrepreneurial spirit, and  fight disease of whatever kind.”

Ironically, it would not be long before his words—that may have rung through the crowd as idealistic rhetoric—would soon be challenged into practice. This, my oldest son John, was about to begin living the American dream (but not as I had envisioned on that day).

Sitting in awe and filled with pride, my mind wandered.  I couldn’t help but think back on the journey of our life, and feel sad that John’s father could not be with us to witness the day.   I remembered, as though it had been yesterday, that fateful morning in January, 1975, when two little boys sat huddled together, as I had to tell 7-year-old John, and his younger brother, four-year-old Joseph, the worst news any child could ever hear.  “Your father has been such a good police officer on earth, God has chosen him to patrol the streets of heaven.”   Their father would not be coming home—ever again.

However, this event in 1997 was a day of celebration.  After early-on adversity, always maintaining academic excellence (Georgetown School of Foreign Service Bachelor degree, Notre Dame Law School, and now a Harvard MBA), my son was about to begin on a well-deserved Yuppie journey (or so I thought).

Before the young family relocated to California with his new career, John and his wife Aileen announced that they were expecting their third child in March!  A few months later, one week after Patrick’s birth, John and Aileen anxiously sat in a neurologist’s office waiting to hear the results of a muscle biopsy performed on their, then 15-month-old, daughter Megan.  It became apparent that it was not good news when a counselor was brought in to be present for a parent’s nightmare.  The doctor had said that they should go home and enjoy their daughter; she had no more than one year to live

Meanwhile, we were many miles away in a different time zone (NJ), holding our breath.  When the call finally came and I heard my usually composed son crying, I knew it had to be more than serious. The diagnosis was Pompe’s Disease, a rare genetic form of muscular dystrophy, a lysosomal, glycogen storage, type II disease.  The body is lacking sufficient amounts of one enzyme, Acid Maltase, which breaks down sugar in the cells.  Without it, all the muscles in the body deteriorate, including the major organs.  The neurologist’s report was not hopeful, at all.  He told them that—with the infantile form of the disease—there was little research (he was aware of) or hope for a cure.  This was not acceptable.

As I was a novice in cyber space at the time, my husband and, then 12-year-old, son Jason helped me traverse the Internet on a quest for hope.  After hours of research, we found work being done at Duke University, NYU, Johns Hopkins, and in the Netherlands.  That night we faxed reams of papers to California.  Within days, John was on a plane to North Carolina and Rotterdam.  He, his wife, and children (the oldest child, John Jr., is free of the disease) relocated back to the East Coast for needed family support.   A few months later, yet another blow was delivered.

Patrick was born at over nine pounds, quite hale and hardy.  During a visit for Megan at Duke University, with the new baby in tow, Dr. Chen suggested a simple blood test for Patrick to “rule out” any presence of the disease.  The doctor was shocked when it came back positive.  At two years old, Megan succumbed to the pneumonia virus that also afflicts Cystic Fibrosis children, RSV.  She crashed and was placed on a permanent ventilator.  By the time Patrick was one year old, he too was hospitalized with the dreaded virus and became ventilator dependent.

In January of 2003, after much strife, Megan and Patrick began the Enzyme Replacement Therapy, which they continue to have on a bi-monthly basis–at first, as an outpatient in a New Brunswick, NJ hospital, and now at home.  They do live with a feeding tube and are ventilator dependent.

A book was published, The Cure

Image

And, in 2010, a Movie released, Extraordinary Measures, starring Harrison Ford and Brendan Fraser, portraying my son John Crowley, which relays the trials and tribulations to overcome “Extraordinary” odds.

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Now, 17 years old, last December 2012, Megan had a spectacular Sweet 16 gala; Patrick turned sixteen this March 2014 (a gentle soul, he declined an extravaganza, instead preferred a day w/dad at the rifle range).

Last summer, 2013, Megan “chose” to endure major surgery (which ended up as three surgeries and six weeks in the hospital) to correct a serious curvature of her spine.  With hand-designed Victoria Secret nightgowns (she could not endure the ugly, regulation hospital attire), her fortitude and endurance was truly amazing, but Megan was determined–and, she succeeded!

Agonizing Choices for Lives Saved by Miracle Drugs by Geeta Anand

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Gutsy teen undergoes spine surgery

With accompanying private nurses, they both attend public school in Princeton, NJ, where Patrick has made many friends and excels; Megan is top of her class and is very popular.   Because of Aileen and John’s extraordinary fortitude, care, and patience these children with disabilities have thrived.  Their father’s gifts and success have allowed for his children to enjoy a wonderful quality of life.  Once again, my way of thinking (planning) had changed.  Destiny had its own plan for preparing my son’s journey in life . . .and I can proudly say that he stepped up to the plate.  “To whom much is given, much is required.”[1]

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For of those to whom much is given, much is required. And when at some future date the high court of history sits in judgment on each of us, recording whether in our brief span of service we fulfilled our responsibilities to the state, our success or failure, in whatever office we hold, will be measured by the answers to four questions: First, were we truly men of courage… Second, were we truly men of judgment… Third, were we truly men of integrity… Finally were we truly men of dedication?” [2]    John F. Kennedy

[1] (Bible  Luke 12:48)

[2] Speech to Massachusetts State Legislature, Jan. 9, 1961

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 Picture:  Megan’s post surgery – Began school in September w/her class!

 

 

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Agonizing Choices for Lives Saved by Miracle Drugs by GEETA ANAND

This is a recent Wall Street Journal article about my 17 year old granddaughter (my son John and wife Aileen Crowley’s daughter ), Megan Crowley, an absolutely amazing, very brave and beautiful young lady!
Barbara Crowley Baptiste

http://online.wsj.com/news/articles/SB10001424052702304854804579236133090050044011714megan_640x360[2]

Seven months ago, Megan Crowley made a gutsy decision: to undergo a radical surgery to straighten out her spine, which has been crippled by Pompe disease. Photo: Lexey Swall

PRINCETON, N.J.—Sixteen-year-old Megan Crowley lay facedown on an operating table last June as her surgeon tried to straighten her spine, badly contorted by a genetic disease that nearly killed her as a little girl.

The doctor had warned Megan that she stood a 5% chance of dying from the risky surgery, but she eagerly chose it anyway. Her 15-year-old brother Patrick, stricken with the same rare disease, refused the procedure and awaited news of her at home.

In the operating room, an alarm suddenly blared: Megan’s nerve signals had flatlined, suggesting paralysis. “Megan, wiggle your toes!” her surgeon, David Roye, recalls yelling, waking her from anesthesia. She tried, to no effect.

Megan’s and Patrick’s choices are the kind of agonizing ones now confronting a generation of Americans like them whom biotech breakthroughs have kept alive—but haven’t fully cured.

The two have Pompe disease, which progressively weakens muscles. Until about a decade ago, heart failure killed most babies with Pompe within a few years.

Living With Pompe Disease

Megan Crowley has a rare degenerative disorder that causes progressive muscle weakness.

The siblings’ fate turned in a remarkable family drama: Their father saved their lives by helping develop a drug that restored their hearts, a story told through several Wall Street Journal articles since 2001.

But the drug couldn’t stop Pompe (pronounced pom-pay) from degrading Megan’s muscles. By her freshman year at Princeton High School, she needed a respirator and wheelchair. She couldn’t speak clearly or smile. Her spine bent about 100 degrees.

Dr. Roye offered a risky and painful way to help Megan sit up like other kids. “I would drill screws into your vertebrae,” he told her, “and put rods in to anchor them to your ilium,” or hip bone.

Children like Megan and Patrick, having survived once-fatal rare diseases, often must decide again and again as they grow older whether to endure interventions for their diseases’ complications.

These procedures can bring a better or longer life. They also can be excruciating and, even when successful, can leave the patient waiting for breakthroughs for disabilities that remain.

Some patients decide intervention just isn’t worth the agony. Patrick also lives on a respirator with a bent back, and his muscles continue to degrade. But he refuses operations.

“No!” he screams when asked in an interview if he would consider spinal surgery.

“It’s been hard for us sometimes, and we’ve struggled with it,” says their father, John Crowley, of their choices. “But we’ve learned to accept that what makes sense for each kid is different,” he says. “We realize the risk-benefit for Patrick.”

Thousands with other once-fatal rare diseases confront lifetimes of such risk-benefit decisions. Hundreds in the U.S. with Fabry disease, which leaves patients with severe heart and kidney problems, are alive thanks to a treatment developed in 2003. But they face decisions about surgery for continued complications.

So do patients who previously would have died of Hurler-Scheie Syndrome and Hunter Syndrome. New treatments have saved lives, but patients often remain disfigured and suffer spinal compression. They confront difficult decisions about whether to undergo procedures such as spinal-fusion surgery.

People with Gaucher disease, which causes crippling bone pain, can live longer and with fewer symptoms thanks to biotech drugs first developed in 1991. But for some, the disease continues to turn their bones brittle, forcing them to decide whether to undergo painful joint surgery.

“They face an ongoing series of new challenges and unknowns that we never envisioned when we developed these therapies,” says Priya Kishnani, chief of medical genetics at Duke University Medical Center. “They’re alive and they want us to help them decide when enough is enough. Who am I to judge?”

Roughly 1,000 people are on a Pompe drug in the U.S. and face many of the choices Megan and Patrick do.

Megan, who turned 17 last month, was diagnosed with Pompe at age 1 in 1998. Tests revealed her body made a defective version of an enzyme that digests sugars in muscle cells. Those sugars built up, disrupting cell function.

Doctors diagnosed Patrick with Pompe a few months later. Mr. Crowley and his wife, Aileen, are healthy. But both carry a mutation in the same gene, giving their children a 25% chance of developing Pompe. Their eldest son, John Jr., 19, doesn’t have it.

In 1998, there was no treatment for Pompe. When doctors told Mr. Crowley the children had few years to live, he quit his job as a drug-company executive and started a biotech firm to seek a treatment.

He succeeded. In 2003, Megan and Patrick, then 6 and 5, began receiving the medicine their dad helped develop. It kept their hearts from failing.

But Pompe continued to weaken other muscles. During early elementary school, they were strong enough to sit up. Their spines started to sag by age 9. They “puddled” into their wheelchairs, Dr. Roye says.

As Megan’s body bent, her left lung compressed at age 11, making it harder to breathe and speak. Patrick suffered similar symptoms.

The siblings faced their disabilities differently. Despite her spine’s collapse, Megan whizzed around school in her hot-pink electric wheelchair. “She wants people to know she’s there,” says her homeroom teacher, Julie Dunham. “She bedazzles with her spirit and personality and her desire to achieve.”

Patrick, more sensitive to curious staring, shunned crowds and social events, retreating to his bedroom to play videogames when he could.

As the pair’s spines curved more, the risk of fracture increased. In 2011, doctors suggested surgery.

The parents balked at putting them through a procedure that wasn’t vital to survival. Anesthesia is risky for a child on a ventilator, and one with a degenerative muscle disease often doesn’t recover strength lost in surgery.

Megan changed their minds. Mr. Crowley in 2012 returned from a trip to find her room redone in pink-and-black wallpaper. He says he asked if she wanted to live with such garish colors.

“It doesn’t matter,” she replied. “In a couple of years I’m outta here.”

“Where are you going?”

“College, of course.”

It sank in: Megan, who wasn’t supposed to live to elementary-school age, might go to college. Mr. Crowley says he envisioned her bent way over, wheeling to class on a far-off campus.

“They’re alive and they want us to help them decide when enough is enough. Who am I to judge?”  —Priya Kishnani, chief of medical genetics at Duke University Medical Center

“Nothing else makes her look deformed except for her spine,” he told his wife. “Maybe we should start thinking about the surgery.”

When Megan heard there was an operation that might let her sit straight, “it was like Everest,” says Andrew Condouris, her learning aide. “Once she knew it was there, she just had to do it.”

Patrick had the opposite reaction. “No, no, no, I’m good!” his parents say he shouted when asked if he would consider surgery.

In the summer of 2012, Megan’s parents took her to Dr. Roye, a specialist in straightening children’s spines at Columbia University Medical Center. He told Megan he thought he could achieve “about a 50% correction,” he says. “Think of the operation as giving you an internal brace to keep you from collapsing into your chair.”

Then, the warning: “There is a small chance you won’t survive the procedure.”

Megan didn’t speak as they drove home, turning up Katy Perry on her headphones, she says, to drown out emotions that swung from excitement at the prospect of sitting straight to terror about possibly dying.

In October, Megan wheeled to her dad as Sunday-night football played. “I’ve made my decision,” she told him.

Mr. Crowley says his stomach tightened. The possibility of losing her terrified him.

“I want to have my operation,” Megan told him.

“Why?”

“I don’t like the way I look and I don’t like the way I feel.”

It was the first he’d heard Megan complain about her appearance. That night in the kitchen, Megan laid out a schedule. She wanted her sweet-16 birthday party in December and her surgery the next June. She would recover for junior year.

As Megan’s birthday neared, she reserved the Westin Hotel ballroom and invited 200 guests. “This might also be my wedding,” Megan told her parents—in hopes, she says, that reminding them that marriage might not be in her future would persuade them to spend liberally.  http://www.youtube.com/watch?v=QbQ-vskIdAo

On Dec. 15, 2012, in a bright-pink sequined dress, Megan wheeled into the ballroom to Lady Gaga’s “Born this Way.” She called guests forward as candles were lighted: friends, cousins, nurses, researchers who had treated her.

She called up her dad’s colleagues from Amicus Therapeutics, the firm he heads that develops Pompe drugs. “Thank you for all that you have done for so many and for the work you continue to do to make a better medicine for me and Patrick.”

Patrick gave a short speech, saying, “I love you, Megan.” When dancing started, he grew agitated, then tearful, as he did in loud places, his parents say. A nurse sped him home to his bedroom.

In the next months, as attention turned toward planning Megan’s surgery, her parents say they asked Patrick whether he wanted the procedure, looking to make him feel included.

The repartee became a family joke. A parent would say, “Patrick, do you want…,” and they would laugh as he shouted, “no!” before the parent could finish.

On June 18, Megan’s parents checked her into the hospital with three pink suitcases. In the first of two planned surgeries, Dr. Roye drove screws into several vertebrae and cut into some of the most deformed to reshape them. He drove six screws into her forehead to attach a carbon halo to later apply traction to stretch her back.

In her room after the eight-hour surgery, Megan was unrecognizable. Her face was swollen, and her arms and legs bruised from intravenous tubes. Her parents stayed up, administering painkillers.

Later, doctors attached 10-pound sandbags on pulleys to her halo to stretch her spine. She lay faceup in traction, stitches running down her back underneath her, for two agonizing weeks, her parents taking turns holding up an iPad showing movies.

During the second surgery, Dr. Roye anesthetized her and cut her back open again, attaching metal rods to her spine. He was pulling her spine straight when the nervous impulses stopped.

The warning alarm evoked a recurring nightmare for Dr. Roye, a dream in which he takes a child’s spine apart and can’t get it together again.

He ran through a checklist he wrote for crises. Temperature? Normal. Blood pressure? Normal. Screws? None had moved into her spinal canal.

But when he woke her, nerve signals didn’t appear. He had to undo whatever damage he’d done.

He began taking out the rods. With the last out, her impulses had returned.

When Megan woke again, she knew something was wrong. Her halo was still on. With a tube in her throat, she looked at her dad and then up at the halo, demanding an explanation with her eyes.

“Megan, you did great,” he told her. “Everything went well.”

The next evening, Mr. Crowley says he finally told her the surgery hadn’t gone well. If her spine wasn’t permanently damaged, she would need a third surgery.

“You lied to me, daddy,” she repeated, crying. “You told me all my life you’d never lie to me.”

Scans showed no damage, and Dr. Roye decided to try again. “No matter what, safety must be No. 1,” Mr. Crowley says he told Dr. Roye. “If we could just have her back the way she was, we’d be happy.”

On July 12, Megan was wheeled into the operating room. At 4 p.m., Dr. Roye reported the surgery was successful, straitening her spine enough so she could appear to be sitting up.

For Patrick, though, seeing Megan in the hospital “sealed the deal” against surgery, Mr. Crowley says. He was horrified to see her in traction, wounds oozing where screws held the halo. Patrick didn’t ask to visit again.

“He doesn’t like the way he looks,” Mr. Crowley says. “But knowing what Megan went through, there’s no way he would ever consider that surgery now.”

When Megan returned home after 32 days, she set a goal: By Sept. 7, she would recover enough to go wedding-dress shopping with her engaged cousin.

That day, in a black-leather skirt and high heels—sitting up straight—Megan wheeled into a Manhattan bridal store. Gowns and mirrors were everywhere. For the first time since surgery, Megan says, she forgot she was in pain.

School started two days later. During English, Megan’s back pain grew unbearable. She left the room to cry in the hallway. “Honey, let’s just go home,” her nurse said.

“No,” Megan replied, wheeling to the classroom.

“She’s like a typical teenager in many ways,” says Mr. Condouris, her aide. “But you also see an individual who is pushing herself out there—ambitious, driven, with a real sense of who she is and what she wants to do.”

Megan and Patrick probably face lifelong complications and will need constant nursing care unless new treatments can reverse the disease. Pompe experts say they don’t yet know what life expectancy is for patients on the new drug.

Mrs. Crowley says she finds it unbearably sad knowing how frustrated Patrick is by his inability to move. But she says they take comfort that he isn’t in pain most of the time and enjoys many daily activities.

Megan has lost most leg movement. Her bones are brittle. She can move her arms enough to type on her iPhone and operate her wheelchair but is likely to lose more strength unless new treatments are found.

Still, her father says, “she thinks there’s more therapies coming for her down the road, so there’s hope.”

In the fall, he took her to buy SAT-prep books. He asked: “Are you ready yet to go to Notre Dame?” his alma mater. Megan responded that socializing was her priority.

“Notre Dame doesn’t have sororities,” her mom told her later. Megan replied: “So maybe I’ll just have to go out there and start some.”

She asked Mrs. Crowley to look at her new school photos. In years past, she approached picture day with resignation, slumped so far that her shoulder was almost at head’s level.

This time, Megan says, she rolled to the photographer excitedly.

Mrs. Crowley looked at the photos. Megan still couldn’t smile, but otherwise looked like other kids, holding up her head. “They’re really nice,” she said.

“Order some more,” Megan said.  “They’re awesome!”

Megan thank you0001

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Everywhere First

BY JASON BAPTISTE
everywhere-first-464x280For the past few years, the trend has been to be mobile first and it’s the end all to be all. There’s this thought that being built for a mobile device was the final frontier and the biggest shift we’ve ever seen. What if it’s just the first shockwave of a big earthquake? What if it was part of the real big trend that’s playing out. Keep in mind, the Post PC era is only really 4 years old (the post pc era started in my mind right around when the iPad came out and iPhone+Android were clearly going to be winners). Something struck me quite bluntly when reading through and paying attention to Dropbox’s DBX conference. It’s the fact that we live in a world where it’s not going to be 2-3 screens – tablet, mobile, and desktop. It’s going to be a world where we will be using many different devices, we are going to be everywhere. Here’s just a small sample of the devices that seem realistic to take us “everywhere”:

– Laptops which will be like trucks, but still exist.
– Tablets that will eat away the majority of laptops usage while expanding time spent.
– Mobile smartphones which will only grow in dominance as they replace feature phones.
– The smart television. We know it is coming and we know the major players will do something here.
– Gaming consoles. XBox, Playstation, Ouya, and more.
– Google glass. One part of the wearable computing trend. It seems like a toy now, but there’s something here.
– Wrist computers. Pebble was the first and samsung to apple are planning something here.
– Car navigation systems. iOS 7 cemented Apple is coming here, Microsoft is doing something here, and if you’ve been in a Tesla, this is an obvious place.

Eight total screens, seven of which were nothing more than science fiction or rumors on Mac sites less than a decade ago. Ten years from now, it’s not to fathom that there may 8 more new screens. On top of that, each household is going to have multiple copies of each type of device.

What do Netflix and Skype have in common? They are both perfect examples of everywhere first companies. Netflix can be found on your laptop, iPad, kindle fire, iphone, samsung smart tv, playstation, and more to come. They’re putting substantial efforts into mobile, likely more than anywhere else, but they are not saying mobile is the end all to be all. Mobile was the first shockwave in the earthquake of everywhere first. The first rumbling of what this decade is about: computers are going to be everywhere.

I’ve thought about what are the four key pillars of being everywhere first. You could either think of this as a way to best think about building your app or as a way to think about new infrastructure opportunities. For example, Dropbox built an entirely large company around data+sync, knowing that we were moving to an everywhere first world.

Design and interface
Design and interface is a key characteristic and important part of an everywhere first world. We thought for a while that we could just take the desktop and put it on a bunch of other devices. That didn’t work for the tablet and it’s not going to work anywhere else. Each app needs to treat each class of device as having a unique interface while maintaining a human interface guideline of their own. Notice that Netflix is different yet very similar across all of their different screens. Responsive design is an alpha version of this on the web, but it has its shortcomings from a performance and feature limitation perspective. It deserves a better solution to the problem of “publish once, go everywhere”.

Data and Sync
I think this is the real beauty and necessity of what we call the cloud. It lets us have our data synced and available across a whole slew of devices. Start a movie on your iPad with Netflix and then finish it on your Playstation right where you left off. Dropbox is trying to bring this to the general public by making your files sync’d across all your devices. BaaS companies like Parse, Firebase, Kinvey, and more are allowing developers to easily have one backend that can work across their apps and sites across a bunch of different devices. What was one of the most exciting announcements that Twitter has made in recent history? No it’s not Vine or photo filters. It’s the fact that direct messages being read and unread sync across all of your different devices. True cross device applications sync seamlessly everywhere.

Personalization
Personalization could also be referred to data, but in this case I’m not referring to the data you store, but the data that tracks what you do. In a one or two device world, it was somewhat easy to track data on a user. Every startup with decent scale is data driven, whether it’s Netflix or Skype. They do this well by having a login system, but what about places where there are no login systems. The biggest place this applies is in the world of adtech and there are already companies worth 9 figures trying to solve this problem – Drawbridge and TapAd. Brands want to be able to show relevant and useful ads everywhere. They realize the world is comprised of people using many different devices and want to bring data+personalization everywhere. In short, a great cross platform app makes it easy to target data across many devices to the same one user.

Monetization
Making money on one device is hard, let alone on 8 different types of devices with different interfaces. You either sell stuff (digital or physical) or run advertising as a business model online. You need to have an application that can easily take your business model across every single device with the same amount of zero friction. Charging for products and subscriptions on iOS is getting easier and Android is a bit tougher. The problem is, having two separate billing systems and userbases. Companies like Stripe really excite me, because they’re reducing payments to a simple API that will just work everywhere. Easily purchase and subscribe the same across everywhere.

Advertising is a whole other beast. We haven’t really gotten digital advertising right, except for search, on the first device class, laptops. Mobile monetization on advertising is a shitshow as everyone knows. I think this is where the whole native advertising hoopla has weight to be to everywhere first what search advertising was to the 1st wave of the internet. It basically says “hey, make my advertising fit the look and feel of the content everywhere”. It’s an advertising unit that isn’t thrown off on to the side, but fits into the look and feel of whatever device you are on. A really interesting approach to native advertising would be to offer it as an API where you could style the data such as title, excerept, thumbnail, article content,etc. that API call returns. You can’t fix the advertising side until you have the design/interface and personalization side down. Marketers expect the message to fit the medium and to be able to target.

The web is the common thread
The one thing all of these devices will have is a web browser. It’s important, because it’s easy to transform web content and applications to work on new devices. More importantly, the structure of URLs allow data and the sharing of content across devices to “just work”. http://foo.com/foo.html will move from browser to browser. It also reduces the complexity of having teams building apps on each platform. The downside is performance. The web doesn’t perform as well as native applications. Finding a novel solution to letting the web perform at native speeds across all devices is something worth solving. I don’t think anyone has quite cracked it yet. That’s why even though Netflix, Twitter, and Skype are on all class of devices, they’re primarily being built natively for each platform. They can do that, but most other companies can’t.

If you realize that it’s not about mobile first, but a world where content and applications should be everywhere first, I bet you’ll open your eyes to a wider range of possibilities. Too many folks are building what has been possible before, but just slightly better, instead of something that wouldn’t have made sense until being everywhere first.

http://jasonlbaptiste.com/featured-articles/everywhere-first-why-mobile-was-the-first-not-the-final-step/

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Isn’t it time: “Gun Safety”

gun_control_graphic

BY BARBARA BAPTISTE

An irony?  Most people own and want guns to keep them safe from people who have guns.   

Admittedly, inbred race bias is an issue, but think about it. The Number One reason why it was orchestrated for George Zimmerman to  receive an acquittal:  “A message for Gun propaganda.”

In the past, yes, lynching was a “message” for a black man. However, think about the real accomplishment. . .A clear message for Pro-gun and “no control” legislature.  It is not and should not be a political issue.  This is our right for the pursuit of happiness, safety in the greatest nation in the world.  Our ancestors fought hard–and people are still fighting all odds–to come to America because our Constitution was designed to protect its citizens, not harbor crimes.  That was not the intent of our forefathers.   

George Zimmerman is a classic case sociopath …an easy pawn used for evil intent. In that sense, I believe that he [Zimmerman] would have done the same thing to a white (pink, yellow, orange) man…. He [Zimmerman] is a bully and all bullies are cowards that hide behind a bravado–in this case, a gun! In my opinion, he was acquitted mostly to send a message for “Gun Power!”

Sadly, as in most instances, the saying, “Follow the Money” holds true…and Guns are a multi-billion+ dollar business that the powers that be will not relinquish willingly!  It trumps race relations, small potatoes as compared to the almighty dollar. The root of all evil? Yes. Money is power since the beginning of time. These gun powerhouses use “fear” to “Divide and Conquer.” Isn’t that what they are accomplishing?  Let us not allow them that liberty; we need to band together. Focus on what “can be done,” what good can come of such a travesty… “United We stand; Divided We Fall.” 

With so much gun killing in our nation, there has to be a reason why this one, isolated case has so passionately captured the attention of the entire country.  “We the People” are being asked of something…greater than ourselves.  .  .To see through the muddied waters of evoking black vs white.  Yes, this is a Civil Rights issue, but this time it is not Black vs. White.  It is about making America safer for all people.  All parents want to feel safe with sending their children to school, walking home on a rainy night.  We all bleed the same. 

This is a loud call for action from all American citizens. Instead of more hate and separation, “the people” need to stand up and stand together–black/white/brown/yellow/purple/green–against this very real and evil menace called “Gun Violence!”  Then, Trayvon Martin’s tragic death will not be for naught.

I would further propose, in the hopes of successful legislation, sooner rather than later, at the least, a strict Gun “control” law should be dedicated: “The Trayvon Martin Gun Bill!”

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