Beata Pozniak wrote -
Hi, I’m Beata Pozniak. You might remember me from Oliver Stone’s JFK ( as Marina Oswald), or from my roles on Melrose Place (as Dr. Petrova –Fielding), Babylon 5 (first female President of the World) or from The Young Indiana Jones Chronicles, where I played a revolutionary fighting for freedom. Today I’d like to ask to join me in my fight to raise awareness for Neutropenia
Neutropenia is a condition caused by a lack of neutrophils in the blood, normally produced in bone marrow. Today, it is known as one of the world’s “orphan diseases” with a limited number of researchers, doctors or pharmaceutical companies specializing in the condition, causes and cures. Children born with this blood condition are at high risk of chronic bacterial infections. For older patients, severe infections (including HIV) as well as the drugs and chemicals used in chemotherapy can also lead to neutropenia.
In September 2009, Ella Jewell was born. At first, her family did not know of her disease but Ella's doctors said there was something wrong. They said her body was not producing the most abundant white blood cells in the body, neutrophils. Neutrophils are the body's defense against bacterial infections. Ella's parents took her to see many doctors, but no one could diagnose what was going on with Ella. However, they did say that if Ella were to get sick, even with a simple cold, she could become devastatingly ill.
In December 2009, after months of fear of losing their child, Ella's parents learned of the country's leading researchers for neutropenia. They took Ella to these doctors and she was properly diagnosed with a very rare blood disorder, Severe Congenital Neutropenia (SCN). To learn that their daughter was diagnosed with this serious disease was heartbreaking. They cried as the doctors held their hands through learning all the unknowns associated with this orphan disease.Ella was given the one medication that is available to treat neutropenia, G-CSF. G-CSF does not work for everyone and is not meant for every day use. Ella immediately started on G-CSF and her family prayed for it to work.
On Christmas eve, the doctors called and said to Ella's parents "Your daughter is a Christmas Miracle". The medication worked! It was amazing that she did not become ill in the months leading up to her diagnosis. Ella's family felt beyond blessed. Although, the medication worked for Ella it does not work for everyone with the disease. And, it is not meant for everyday use. Dr. Dale's and his team are working on bringing a new medication to clinical trials but they need funding. Ella's parents decided to start http://www.ellajewellfoundation.com/ the only non-profit organization in America that supports Neutropenia related research. They work very hard with many other families affected by the disease, in hope that one day, Ella and everyone like her will have alternative medication choices and one day be cured.
I am a supporter of Neutropenia related research through the Ella Jewell Foundation. The Ella Jewell Foundation (EJF) is a non-proift public charity recognized by Section 501(c)(3) of the Internal Revenue Code. The EJF raises funds for the leading neutropenia research team lead by Dr. David C. Dale at the University of Washington, Seattle, WA.
As soon as we raise enough money for Dr. David Dale and his team at the University of Washington they can start a clinical trial of a new oral treatment for Neutropenia and their research on the role of gene mutations in the disorder.
I set my goal to a modest amount, but with your help it can increase overtime and make a difference!
* If you donate $20 before the end of 2014, you can choose to be mentioned on The Ella Jewell Facebook Page with BIG Thanks!
* If you donate $50 before the end of 2014 you'll receive a 5.5" X 4 1/4" black & white postcard of one my art works signed by me and you can choose to be mentioned on The Ella Jewell Facebook Page with BIG Thanks!
* If you donate a $100 before the end of 2014, you'll receive a color 5 1/4" X 7" postcard of one my art works signed by me and you can choose to be mentioned on The Ella Jewell Facebook Page with BIG Thanks!
* If you donate $ 500 or more before the end of 2014 you'll receive a L 28.6" X W 20.51" high quality poster print with one of my artworks signed by me and you can choose to be mentioned onThe Ella Jewell Facebook Page with BIG Thanks!
Just Click the BIG donate button to the right or go one step further and join the team to help fundraise and reach out to everyone you know to help support our cause.
Please remember Your donation is tax deductable.
With Deep Gratitude,
To learn more about Neutropenia visit:
* Neutropenia Network: http://www.neutropenianet.org/
* Neutropenia - The Importance of Healthy White Blood Cells http://www.itvisus.com/programs/hbhm/episode_2605.asp
*The Dangers of Neutropenia http://www.itvisus.com/programs/hbhm/episode_1902_the_dangers_of_neutropenia.asp