A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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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