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Girl With Rare Blood Disorder Works to Inspire Others

Kara Loader is just like any sixth grade girl. She’s been playing the violin for seven years, loves softball, and says she’s really good at school. She’s a huge Taylor Swift fan, and she has a lot of friends. But something sets Kara apart from her friends and classmates, though it’s nothing you’d be able to see on the outside.

11-year-old Kara has been battling severe congenital neutropenia since birth. Neutropenia is a rare blood disorder, meaning her body doesn’t make enough neutrophils in her white blood cells. So when Kara gets sick, or even gets a cut, her body may not fight off the infection as quickly. 

Kara has to be extra cautious and carry a medical kit with her at school, and when she gets really sick, Kara visits a hematology and oncology specialist at the Cleveland Clinic. She takes a shot of neupogen every day, which helps her build her neutrophils. However, she has to watch how much she takes, because the drug increases the risk of developing leukemia.

Kara has become a bit of a celebrity of her own in the neutropenia community. She said her video inspired a woman in her 30’s to talk about the disorder for the first time .”She always thought that it wasn’t okay, like, it wasn’t normal to tell people that you actually have it. And she said that my video actually gave her the courage to tell it to other people,” Kara said.

Kara said she has one message for anyone else battling neutropenia: “I would tell them everything’s going to be okay.” Kara and her family remain in contact with families they have encountered in the hospitals and at a yearly conference for neutropenia.

Ariana-Leilani also has suffered from neutropenia.   Sign her petition to assure she gets proper treatment and protection from abuse.

Read more: Kara Loader

 

Amgen’s Neulasta One of the Top Selling Drugs

Medscape News published a list of the top selling drugs in the United States based on a list produced by IMS Health.   Amgen’s Neulasta, a long acting form of neupogen for the treatment of neutropenia (the treatment denied but needed by Ariana-Leilani), made tenth place at $3.6 billion in annual sales.   Read more at Medscape

Why We Cannot Take a Child’s Illness for Granted?

Thousands carol to fulfill dying girl’s wish in Pennsylvania.   Delaney Brown, 8, of West Reading, Pa., was dying of a rare form of leukemia but her community gave her all the support it could.  Brown also got to talk to pop star Taylor Swift on her birthday.

Ten thousand people in Pennsylvania came out to sing to a terminally ill eight-year-old girl who has given them much inspiration during her courageous battle with cancer.   On Saturday an estimated 10,000 people visited the home of Delaney Brown in West Reading Pa. The group sang songs and fulfilled one of the dying girl’s last wishes — a huge holiday sing-along outside her house.   Laney arrived home from the hospital Thursday, Dec. 19, according to her “Team Laney” Facebook page. Her doctors have said her rare form of leukemia means she only has a few days or possibly weeks left to live.

She died on Christmas day.

Tell Mayor Vince Gray and President Obama to stop taking Ariana-Leilani’s life threatening illness for granted.  Let’s help Ariana-Leilani before it is too late; sign her petition today: http://www.ariana-leilani.com

Read more: http://www.nydailynews.com/news/national/thousands-carol-fulfill-dying-pa-girl-article-1.1556833#ixzz2oWKqTOOs

http://social.newsinc.com/media/json/69017/25467232/singleVideoOG.html?type=VideoPlayer%2F16x9&videoId=25467232

Short Video Documentary “Small Cries”; A DC American Tragedy

The Save Ariana-Leilani Coalition is pleased to announce the world wide release of the video documentary “Small Cries.”    The six minute documentary tells the story of how the “child protection” systems in the United States are failing, and how Ariana-Leilani is a victim of that failure.  This short and compelling documentary features exclusive interviews, including an interview with Dr. Joy Silberg, who speaks of the error in judgment that many child protective services make in certain abuse and neglect cases.   Very educational and inspiring, and Ireneo Namboka, an international human rights advocate and former UN official.

Definitely a “two thumbs up” “must see” documentary.

Watch the video, sign the petition, save a life:

Documentary “Small Cries;” The Real Ariana-Leilani Story

GoPetition for ariana-leilani

Law Enforcement Closing In On Washington DC Area Child Porn Producers and Abusers (Day 15 of 19 Days of Activism Against Child Abuse)

Washington DC is a cesspool for child porn producers and abusers.   It has much to do with the dysfunctional local government, and the predisposition to cover for those in power who perpetrate these crimes.   They are found not only in positions of power, but also in schools and in the police force.

In the latest take down, a former private school teacher added to the FBI’s list of most wanted fugitives during five years on the run has been charged in Washington’s federal court with producing child pornography.   Prosecutors filed a criminal information charging Eric Justin Toth with child pornography, identity theft and misuse of a Social Security number.   An information is a charging document that typically signifies that a guilty plea is near. Both sides have said that they were negotiating a plea agreement. A U.S. Attorney’s office spokesman declined comment Thursday.   Toth was captured in Nicaragua in April and returned to Washington to face federal charges. He’d been on the run since 2008, when he was fired from his teaching job at the Beauvoir School after being confronted about images of child pornography.

Also, a former D.C. police officer has been convicted of sexually abusing a girl who participated in his church choir. A Superior Court jury convicted 45-year-old Wendel Palmer of numerous offenses.  Prosecutors say that Palmer directed the girl in a choir at a D.C. church that she her and her family attended and which his family ran. Authorities say the abuse began when the victim was 10 or 11 years old, and occurred at the church during breaks in choir rehearsals and other places.  The victim reported the abuse after she turned 18.

Those who are exploiting and abusing children like Ariana-Leilani ultimately will be caught and prosecuted.  Help fight child abuse in the United States, sign the petition to save 10 year old Ariana-Leilani and the fight for children’s rights to be protected:

GoPetition for ariana-leilani

Read more: MyfoxDC and FoxDC

Porn Probe: 341-people Arrested by Police (Day 14 of 19 Days of Activism Against Child Abuse)

Child Pornography

Child Pornography (Photo credit: Wikipedia)

341 people, including 108 Canadians and 76 Americans, have been arrested in an international child pornography ring that was largely centred around a Toronto-based film company that distributed images and videos across the globe.  The three-year investigation included Canadian and international law enforcement agencies and rescued. Dubbed Project Spade, police said the effort resulted in 386 children being saved from exploitation.

Police first became aware in 2010 that Toronto-based Azov Films was distributing pornographic images and videos of children as well as streaming them on its website.   In 2011, police carried out a search warrant in Toronto’s west end. Azov was shut down and its owner, 42-year-old Brian Way was arrested. More than 45 terabytes of data were seized.

Way was charged with multiple counts related to child pornography, including selling and distributing child pornography and instructing commission of offence for criminal organization.

The company had been operating since 2005 and had revenues in excess of $4-million.   For approximately $40 customers could buy about an hour of video, and receive photos at a discount, delivered online or by mail, police say.

Some of the children exploited in the films were as young as five.  Azov commissioned videographers around the world to take pictures and images that the company would subsequently distribute through the mail and online. Many of the victims were from Ukraine and Romania.  Many of the pictures and videos were shot in people’s apartments, back yards and “dingy saunas.”

24 Canadian children were rescued as a result of Project Spade.  The children were not necessarily involved in the production of Azov material, and their exploitation was discovered when police were investigating people who bought material from the company.

At the home of a retired teacher, they found 350,000 pictures and more than 9,000 video showing child sexual abuse. They say some of the children were known to the man, who is also accused of abusing a child in his family.  Spinoff investigations led to caches of images and hundreds of children from around the world.  At least two teachers and nine medical professionals were among the Canadians arrested.

Beaven-Desjardins said Toronto police subsequently shared the company’s customer databases with other Canadian as well as international law enforcement agencies.

Information on Azov led to more than 150 law enforcement actions against Americans who were purchasing material from the company, including persons in the District of Columbia.

Project Spade arrests by the numbers

  • Ontario: 50
  • Rest of Canada: 58
  • United States: 76
  • International: 164

In Canada:

  •  40 teachers
  •  9 doctors and nurses
  •  32 volunteers
  •  6 law enforcement personnel
  •  9 faith leaders
  •  3 foster parents

Read more: http://www.ctvnews.ca/canada/child-porn-probe-began-with-toronto-man-ends-with-341-people-arrested-police-1.1542666#ixzz2kfnonISg

Help fight child abuse in the United States, sign the petition to save 10 year old Ariana-Leilani and the fight for children’s rights to be protected:

GoPetition for ariana-leilani

Treating Kids’ Cancer With Science And A Pocket Full Of Hope

Dr. Olson draws inspiration and strength from his patients and their families. His decision to work with kids, he says, goes back to something that happened 25 years ago when he was still in training. A 7-year-old girl he was caring for died, and the loss tore at his heart. But his reaction was complicated.

“The night that she died I was walking home, and I was almost skipping or dancing,” Olson says. “I was really light, and I was singing and humming out loud. Neither of these things is typical for me. And it was so absurd to me that this really profound event had happened that day, and I was feeling so opposite.”

So he sat down on a bench and tried to figure out what was going on. It didn’t take him long to realize his mood had to be related to a conversation with the girl’s parents. He’d assumed that after their daughter’s death, they’d want to get as far away from the hospital as possible. But, no.

“They actually tracked me down, and came up and gave me a beautiful warm hug,” Olson remembers. “And they said, ‘Her death to us was as beautiful as her birth, and the reason for that was because of the words you shared with us as we went through this. And we just want you to know that you have a gift, that when medicine doesn’t go the way you want it to, that you can still help families recognize a life doesn’t have to be 90 years [long] to be beautiful.’

“And so I sat there and thought about that for a long time, and I realized that this was a gift that I had,” he says. “And not many people would recognize the gift, or have it or want to share it. But for me it felt like a calling of sorts.”

Olson tore up the applications he’d written for other medical specialties and committed himself to pediatrics. Yet, he also wanted to do research. So he wound up going to the Fred Hutchinson Cancer Research Center in Seattle, where he could practice medicine and be a scientist, too.

In the past 20 years, or so, Olson has cared for hundreds of children with brain cancer. Though many have survived, many haven’t.

Read More: NPR Story

Sign the petition to help save Ariana-Leilani.

GoPetition for ariana-leilani

 

Tragic and Unnecessary…For Trayvon Martin, and for Ariana-Leilani

ariana-leilaniAttorney General Eric Holder on Monday called the death of black teenager Trayvon Martin “tragic” and “unnecessary,” but gave no hints whether the Justice Department will bring civil rights or hate crimes charges against shooter George Zimmerman in the wake of his acquittal on state murder charges Saturday.

We can prevent the tragic and  unnecessary death of black 10 year old Ariana-Leilani, living in Washington DC and suffering from untreated Severe Chronic Neutropenia (a highly compromised immune system).      Shouldn’t the USA, Mayor Gray’s DC Government, Medstar Health, and Ariana-Leilani’s father Michael Pfeiffer, do the right thing here?  Or are we doomed to repeat past mistakes and fail to protect this child, too?

GoPetition

President Obama urges prevention of future tragedies like Trayvon Martin, so should he.

Ariana-Leilani

Ariana-Leilani: Suffering from Severe Chronic Neutropenia (Sign Her Petition)

“We should ask ourselves, as individuals and as a society, how we can prevent future tragedies like this.  As citizens, that’s a job for all of us.  That’s the way to honor Trayvon Martin.”.”

– President Obama

How can we prevent the death of Ariana-Leilani?   Urge President Obama to act now to prevent her unnecessary death.  Sign her petition today:

GoPetition

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2014 Neutropenia Conference Announced by National Neutropenia Network

The 2014 Neutropenia Family Conference is set for July 11-13 at the beautiful Marriott Eagle Crest in the Ann Arbor Michigan area. Registration will officially open in January 2014. 

Program descriptions and agendas will be posted early next year. It is important to note that the conference will include the most popular features and sessions from past conferences including:

  • One-on-one meetings with the experts
  • Breakout sessions according to disease categories
  • Pain management
  • Dosing basics
  • Primer on Neutropenia
  • Oral Hygiene
  • Facilitating Networking
  • Patients Only Support Session
  • Kids Camp

In addition to the above programs some new ones will be added.

For More Information: 2014 Neutropenia Conference

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