We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Saturday, September 13, 2008

In July, President Bush signed The Caroline Pryce Walker Conquer Childhood Cancer Act.

News from The Children's Neuroblastoma Cancer Foundation:

"The Caroline Pryce Walker Conquer Childhood Cancer Act authorizes $30 million annually for five years to hasten advancements in pediatric cancer research. It creates a national database on childhood cancers to help researchers detect trends in the diseases, and provides educational and informational services to patients and families to ensure they have access to appropriate clinical treatment and the array of vital support services.

During markup of the bill in the House Energy and Commerce Committee, the legislation was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in honor of Pryce's daughter, Caroline, who lost her valiant battle against neuroblastoma in 1999 at the age of nine."

Here's how people can personally get involved in the fight against NB:

The Band of Parents Bound by Hope:
Donations can be made through this website, and they also have a gift shop where things can be purchased. (Many things have been made with artwork from children with NB. I plan to get some of Ellie's art in there to be used... I will let you know when I do that.)

"A group of ordinary parents bound by extraordinary circumstances founded the Band of Parents. Our mission is to raise money to further support and accelerate the research of the talented and dedicated team of doctors and scientists at Memorial Sloan-Kettering Cancer Center (MSKCC), the institution that treats more cases of Neuroblastoma than any other hospital in the world. Our kids' doctors are investigating exciting treatment options that they believe could help save more children with neuroblastoma.

The institution is working on several pioneering treatments including a humanized version of the 3F8 antibody, used exclusively at MSKCC. The mouse-based 3F8 antibody attaches to neuroblastoma cells and kills them. The antibody, developed by MSKCC's
Dr. Cheung, also trains a child's immune system to attack and kill neuroblastoma. Since first used in 1987, 3F8 treatment has greatly improved survival without lasting side effects. The mouse-based antibody’s primary drawback is that it can be rejected by the child’s own immune system (HAMA). It is believed a humanized version would alleviate this issue and make it more effective for a greater number of patients. The cost to develop this treatment is estimated to be just $2 – 3 million, a small sum by today’s standards."

The Lonliest Road

Last year, seven men road across the US on their bikes to raise funds for Neuroblastoma research. Two of those men have since lost their daughters to NB. Several have done another bike ride this year to continue to raise funds and awareness. Please check out their wonderful site!

What else can you do?
PRAY. Pray hard. There are thousands of families all over the world right now, fighting to save the lives of their children. And there are thousands like us, who are fighting to get through the day without our little ones...

Thank you for all that you have already done for our family! You have given to us, prayed for us, and supported us in many many ways. We can never thank you enough for your love and care.


At 12:25 PM, Blogger AJay Piniewski said...

I am sorry for your loss....join the fight against childhood cancer..


At 7:58 PM, Blogger pk said...

Praying still. hugs , pk


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