final NCI budget letter

final NCI budget letter

Your Name , Address, Date

Inside Address – Example to CONGRESS
The Honorable Robert J. Wittman
2454 Rayburn House Office Building
Washington, DC 20515

Example to SENATE
The Honorable Tim Kaine
B4OC Senate Dirksen Office Building
Washington, DC 20510

Dear Congressman or Senator XXXX

Childhood cancer is the leading cause of death among children in the U.S. Each year approximately 13,400 children are diagnosed with pediatric cancer. Twenty percent of children diagnosed die, 60% of survivors suffer life altering impacts.

As stated on its childhood cancer webpage (that hasn’t been updated since 2008) the National Cancer Institute (NCI) indicates that pediatric cancer is “relatively rare.” This insensitive perspective is reflected in the fact that NCI dedicates less than 4% of its budget to pediatric cancer research. The bulk of these research dollars go to leukemia research (that has a 85% + survival rate) and little or nothing to other childhood cancers. Pediatric cancers need more research dollars, including the deadliest cancers — DIPG, AT/RT, neuroblastomas – with these cancers, kids are virtually handed a death sentence on diagnosis, largely due to the lack of research.

As Americans we must demand that our nation invest in pediatric cancer research and give our kids hope. The thousands of kids that die each year, as well as the tens of thousands in treatment, deserve better from this great society. As you approach hearings for fiscal year 2014 we request that you consider the needs of our children and pediatric cancer research. We request that Congress –

• Appropriate that NCI shift funding to increase funds for pediatric cancer research by a significant amount, and that funding levels continue to increase until there are cures, treatments and protocols available for pediatric cancers. (The current quoted 80% pediatric cancer survival rate is deceiving as 60% of kids suffer life altering impacts, and are at risk for secondary cancers because many are being treated with downsized adult protocols.)
• Appropriate that NCI designate a portion of research dollars for the deadliest childhood cancers, realizing that thousands of kids are dying because there has been no research into these cancers.
• Provide Bill language to require a Pediatric Oncologist be appointed to the National Cancer board.
• Provide language that requires NCI to shift resources to allow for an increase in staffing and awareness regarding the facts and not just the statistics of pediatric cancer, including establishing relationships with pediatric oncology facilities around the country.

In closing I would like to thank you for your consideration of this issue so important to our children. I look forward to your response.

Your name
Your telephone and/or email address if you choose

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