A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Creating Hope Act of 2010’

Creating Hope

Grace: A Child's Intimate Journey Through Cancer and Recovery

There are times I wish I could transport my People Shell through time and space so that I would be able to attend an important event… or be able to wrap my arms around someone I love.

I really could have used a People Shell Transport to bring me to Washington D.C. to attend CureSearch’s Advocacy Days and to witness the introduction of Kids v Cancer’s Creating Hope Act in the Senate by Bob Casey. (D – PA) This legislation means HOPE for many who suffer from “rare” diseases. Childhood cancer is classified as a “rare” disease— although 46 children in the United States are diagnosed with cancer each school day and 7 children die from cancer each day. Childhood cancer does not fall under the “rare” category in my personal encyclopedia. I look forward to the formal report from PAC2; Bob Piniewski (PAC2, dad to AJ,) Joe McDonough (B+ foundation, dad to Andrew,) Andy Mikulak (Max’s Ring of Fire, dad to Max,) thank you for your tireless commitment to helping children with cancer. Thank you Senator Bob Casey for your compassionate work– and thank you to all of the childhood cancer advocates who participated. (I will begin searching now for a Transport for next year!)

“Of the nearly one in 10 Americans with rare diseases, approximately two-thirds are children,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD).  “Many of these rare pediatric diseases are very serious and treatments are desperately needed.  By expanding priority review vouchers to include pediatric rare diseases, this legislation would encourage the development of treatments for children with serious rare diseases.”

Now, two reasons why we need to act—now.

(Do we really need “reasons”… these are our dearly loved children fighting for their lives against a horrible disease!)

One of my dear Frovies (Friends I Love, and the “ie” is a hug at the end) on Twitter, Hara, asked me if I would please pray for Nick, passing along his Caringbridge site.

http://www.caringbridge.org/visit/francafamily/journal

My FB buddy, Steve, passed on this:

http://abclocal.go.com/wpvi/story?section=news%2Flocal&id=8031009

Yes, we need HOPE for children. Thank you to everyone working toward this goal. With cooperation, commitment, dedication and hard work, we will collectively reach the goal of curing childhood cancer.

Hero Taylor

Facebook/ Grace: A Child’s Intimate Journey Through Cancer and Recovery

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Dear President Obama

Grace: A Child's Intimate Journey Through Cancer and Recovery

Dear President Obama,

 

My name is Melinda Marchiano, and I am sixteen years old. I am writing to you today because I see an urgent need for citizens of our country who are in desperate need. The citizens I am speaking of are the smallest, most fragile, and most incredibly brave people you have ever seen.

The citizens I speak of… children with cancer.

Did you know that cancer is the #1 disease killing children in our country?

Did you know that when children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults?

Did you know that the National Cancer Institute and the American Cancer Society allocate a smidgen of their budgets to childhood cancer?

Did you know that there has not been a single new drug approved to fight pediatric cancer in the last twenty years?

Did you know that CureSeach believes—with adequate funding—a cure is within our reach?

On March 16th and 17th, Childhood Cancer Awareness & Advocacy Day will take place on Capitol Hill. Please support the “Creating Hope Act of 2010” that was introduced by Senators Brownback, Brown, and Franken, and other childhood cancer legislation.

There are 40,000 children in the United States fighting cancer as I type these words. They need hope. Their parents need hope and their siblings need hope.

We are forgetting these children. There is no major celebrity to speak for them. There is little awareness of childhood cancer in our society, and what this translates into is suffering children.

I love my country—a land where anyone can speak for what they believe.

I believe these forgotten children need a Children’s Rights Movement.

I am the first to join the movement. Will you be second?

With my sincere gratitude,

Melinda Marchiano

16 Year-Old Author of Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

Thinking of Anais on her Disney trip... have fun!

 

 

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