Tag Archive | Neutropenia

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

 

Neutropenia Superhero

neutropenia superheroNeutropenia is a disorder seen in individuals with an abnormally low count of neutrophils, a type of white blood cell that fights off infections within the body. Ryder, who was diagnosed in his infancy and is now almost 2, has endured countless needle pricks and hospital visits and faced several wrong diagnoses but kept fighting through it all. His continued strength and courage over the past year has resulted in his superhero status, and he is now known as Super Ryder.

Learn more: Superhero

Informative Presentations and Photos from the 2014 National Neutropenia Network Family Conference

The 2014 Neutropenia Family Conference was the most informative and well attended.

Copies of the informative presentations from the 2014 Conference on neutropenia are now available, including those by Dr. David Dale, Dr. Boxer, Dr. Bonilla, and Dr. james Connelly:

 

Read More: National Neutropenia Network Family Conference 2014

 

 

National Neutropenia Network Holds Successful 2014 Conference in Ann Arbor Michigan

Gathering parents and children, like Ariana-Leilani, from all across North America, to meet and hear from each other and leading Neutropenia experts, the National Neutropenia Network held another successful conference July 11-13, 2014.     Among the distinguished presenters were Dr. Dale (University of Washington), Dr. Laurence Boxer (C.S. Mott Children’s Hospital), Dr. Peter Newberger (UMass), Dr. Mary Ann Bonilla (St. Joseph’s Regional Medical Center).   To learn more go to http://www.neutropenianet.org/conference 

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Rock Out for Ryder Benefit

Ryder Has Neutropenia

Ryder Arnold is fifteen months old, and like Ariana-Leilani, has the rare blood disorder Neutropenia, which compromises the immune system.   Although Neutropenia is a non-cancerous disease, many treatments are the same as cancer patients constantly monitoring the ANC (a count that reveals the immune system’s strength), bone marrow biopsies, and takes Neupogen injections each day to help boost the immune system.

At this point, Ryder’s prognosis, like Ariana-Leilani’s, is unclear.

Friends of Arnold’s have organized a benefit for Ryder. They have named it “Rock out for Ryder.”   Some of the proceeds will be donated to the Ella Jewell Foundation, which is a Neutropenia research foundation named after a little girl who died of Neutropenia.  Rock Out for Ryder will take place on Friday, May 16, at the Music Union Hall (116 N. Green Street). Three rock bands will perform: The War I Survived, Mudoon’s Clever Girls, and Canzo. The show begins at 7 p.m., admission is $5 and the event is BYOB. All ages are welcome.

Ariana-Leilani is being denied the Neupogen that is helping to keep Ryder alive.   Please consider signing her petition to get proper treatment:

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Neutropenia Family Conference 2014 July 11- 13th Ann Arbor, MI

IMG_0464Participants in the 2014 Neutropenia Family Conference will have a chance to speak with the experts, hear presentations covering the latest treatment and research, and to participate in programs geared toward managing life with neutropenia in it. It is a weekend of learning and fun for the children. There will be many opportunities for participants to get to know each other in a comfortable and nurturing setting.

This year sessions will start on Friday July 11th at 1:00 PM with a choice of workshops and an opening session for all.  The popular Friday Meet and Greet Reception has not gone away. As in the past families and presenters will have a chance to mingle and get to know each other while enjoying a filling assortment of appetizers.

Private one-on-one sessions with the doctors will be offered towards the end of the conference on Saturday afternoon instead of before the opening session on Friday.This should make them more productive than ever as patients will have the benefit of knowledge gained at workshops.

This year with the first ever Friday Kids Kamp parents will have the opportunity to attend the educational sessions on Friday afternoon from 1:00 to 5:00 knowing their children are having fun in a safe environment with their peers. Children will be welcomed back to Kids Kamp on Saturday from 8:30 to 4:30 where another day of learning and fun activities will be presented by the Child Life staff from the University of Michigan.

Kids Kamp is now divided into two age groups. One for ages 3-5 and one for ages 6 and older.

On Saturday evening there will be a family dinner where participants can relax and enjoy time with new friends.

The 2014 Neutropenia Family Conference comes to a close on Sunday, July 13 after breakfast and a final session.

Friday, July 11, 2014 at 1:00 PM Sunday, July 13, 2014 at 11:00 AM (EDT), Ann Arbor, MI

To learn more and/or to register go to Neutropenia Family Conference. www.neutropenianet.org.

 

Honey Said to Potentially Prevent Low White Blood Count

The Mayo Clinic notes that honey may be a promising and inexpensive way to prevent low white blood cell count caused by chemotherapy. In one small trial, 40 percent of cancer patients who were known to be at risk of neutropenia (very low blood count) had no further episodes of the condition after taking two teaspoons daily of therapeutic honey during chemotherapy. More research is needed, but the remedy could hold great potential.

Read More: Healing Honey  and Health Benefits of Honey

Local Girl Hoping to Raise Money for Neutropenia Through Special Event

Hoping to help support a better treatment for Neutropenia, ten-year-old Kara Loader, who was diagnosed with the disorder, is hosting “Bowling for Neutrophils” on March 15 in St. Clairsville.  Ariana-Leilani also suffers from Neutroepenia. Neutropenia attacks and kills neutrophils which are the part of white blood cells that fight infections in the body. Kara and her mother, Tammy, decided on a bowling event because they say pretty much anyone can bowl and almost every community has a bowling alley.

Besides bowling plenty of strikes, Kara hopes to accomplish another thing next Saturday. “I would like to get at least a thousand dollars for neutropenia because they’re trying to come up with a pill so I don’t have to take a shot anymore,” said Kara. “That’d be really nice.”

Teams of 5 to 7 people can sign up before hand and raise funds for the event. Their goal is for each team to raise at least 100 dollars. Individual bowlers are welcome too.

Prizes will be given away for the best team name, and for whoever raises the most money. Bowling for Neutrophils will be held Saturday night, March 15, at 5:30 p.m. at St. Clair Lanes, St. Clairsville, Ohio.

For more information, call 740-680-3080.

Learn more: Fund Raising for Neutropenia

Leutrell Osborne, Sr. Former CIA Case Officer, Joins Fight to Save Ariana-Leilani

WASHINGTON DC, and GENEVA –8 January 2014 — Dr. Ariel King, President and Chair of the Ariana-Leilani Children’s Foundation International, an internationally recognized advocate for children’s human rights, announced today that Mr. Leutrell M. Osborne, Sr., agreed to serve as the Vice-Chair of the Foundation’s Board of Directors.  Mr. Osborne is an ideal choice because he brings a unique perspective of channeling his international intelligence experience into global peace and harmony.

With the Foundation’s mission dedicated to the advocacy, education, global adoption and adherence of children’s’ human rights, based on the United Nations Convention on the Rights of the Child (UNCRC), Dr King has been selecting a team of experts since 2009 to help facilitate the treatment of Ariana-Leilani, a 10 year old, who is being denied access to medication that would save her life.  Said Dr. King, “I knew Mr. Osborne was the right person for the Foundation after reading Mr. Osborne’s memoir:  Black Man in the CIA (2012).  The United States Central Intelligence Agency (CIA) hired Mr. Osborne for 27 years and he served as a Case Officer, Communications Security Officer and more importantly, he was a Counter Intelligence officer who has experience identifying, analyzing and neutralizing adversaries in over 30 countries on 4 continents.  With his retirement from federal service in 1994, Mr. Osborne opened his services to domestic and international clients, like our Foundation, and his combination of experiences would add valuable insight into how to address the human
rights of children, including Ariana-Leilani Margarita Alexandra King-Pfeiffer.”

Mr. Osborne’s skill set is exactly what is required for the delicate situation of Ariana-Leilani, a 10-year old dual German/American citizen with a rare disorder, who is being denied access to life-saving medical treatments.  The Foundation’s attorney, Mr. Roy Morris, added, “Mr. Osborne brings a fresh perspective into this fight for children’s human rights, including those of Ariana-Leilani’s.  His experience and understanding of the inner workings of the intelligence community and the “dirty tricks” that some of its members sometimes undertake will be essential for our success.”

Mr. Osborne’s company, The Osborne Group International, improves company cultures and efficiencies for its clients by utilizing teams of skilled risk managers who perform organizational transformations to mitigate difficult business challenges that can arise either from the normal flow of business or from unanticipated contingencies.  Stated Mr. Osborne, “We’ve experienced a lot of challenging situations, similar to Ariana-Leilani’s, where everyone knows what they should do, but maneuvering within the system requires a lot of intelligence. That’s why I’m looking forward to working with Dr. King and the Foundation.  I can bring my expertise, experience, and network of relationships to provide an even higher standard of business, analysis, risk assessment and due diligence support.

Read more: Ariana-Leilani Children’s Foundation International

Identification of Child Abuse in Washington DC

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

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

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How Plerixa Fights Neutropenia

English: Reference ranges for white blood cell...

Ariana-Leilani suffer from Severe Chronic Neutroepnai.   Neutropenia is a condition characterized by the lack of a type of white blood cells, also known as neutrophils, in one’s blood circulation. Patients with neutropenia who receive plerixafor become prone to oral, skin, genital infections and in worst cases, a fatal whole-body infection.

Previously, it was known that Plerixafor increases the concentration of these white blood cells in the blood by inhibiting a protein called CXCR4. This inhibition prevents neutrophils in the blood stream from returning to the bone marrow, which is the primary compartment where the white blood cells are stored and released. It is therefore commonly accepted that the efficacy of the drug arises only from the release of these white blood cells from the bone marrow.

However, scientists at SIgN found that the inhibition of CXCR4 by the drug actually plays a dual role – it increases the neutrophil count in the blood through their release from the lungs, while simultaneously promoting their retention in the blood stream. Results of the study were published in the Journal of Experimental Medicine (JEM).

Discovery of this additional mode of action not only provides a deeper understanding on the drug’s mechanism; it also contributes to a more effective use of the drug, which may help to reduce the risk of bacterial infections in neutropenic patients.

“We have identified the precise mechanisms of plerixafor treatment, which has important implications on its usage. We can understand through this study the effectiveness or limitations of the drug on certain patients and thereafter craft new clinical approaches to better treat them. Our study forms a conceptual framework to establish improved therapeutic strategies for neutropenia,” said team leader Dr. Ng Lai Guan from SIgN.

The article can be found at: Devi S et al. (2013) Neutrophil mobilization via plerixafor-mediated CXCR4 inhibition arises from lung demargination and blockade of neutrophil homing to the bone marrow.

Sign the petition to make sure that Ariana-Leilani gets the life saving medicine to fight her severe chronic neutropenia:

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