You Can Be A Kids’ Cancer Advocate

CALL TO ACTION SPRING – FALL 2019:

Encourage Senators to support the “RECALCITRANT CANCERS SHOULD INCLUDE DEADLY PEDIATRIC CANCERS” language submitted in the Spring.  This will extend the current Recalcitrant Cancers designation to INCLUDE the deadliest of kids’ cancers.

I am so impressed by how many people have reached out about how to advocate for change!  My suggestion, reach out to your Senators and Representatives and let them know that you support kids fighting cancer and that you expect them to do the same.  Imagine if our representatives joined our fight against cancer! 

I always include something about why I fight, “My daughter was diagnosed with brain cancer in 2016 at only 3 months old. After numerous surgeries including two brain surgeries, we began chemotherapy. Sadly, the five chemotherapy drugs she was given were all approved prior to 1983 and all for adults. Two of which were designed to treat testicular cancer. NONE of her treatments were designed for children. None were designed for a child’s still developing organs. As a result, the “watered down” adult chemotherapy drugs she was given destroyed her organs and she died of multi-organ failure as the result of toxic chemotherapy at only 5 months old.”

Make it personal.  Make it your own.  Make it often!  It is estimated that worldwide, a child is diagnosed with cancer every 3 minutes.  

  • FALL 2019: Encourage Senators to support the “RECALCITRANT CANCERS SHOULD INCLUDE DEADLY PEDIATRIC CANCERS” language submitted in the Spring.  This will extend the current Recalcitrant Cancers designation to INCLUDE the deadliest of kids’ cancers.
  • SPRING 2019: Thank House of Representatives for adopting the “RECALCITRANT CANCERS SHOULD INCLUDE DEADLY PEDIATRIC CANCERS” language in their Appropriations Bill.
  • SPRING 2018: In Spring of 2018, we asked for you to help us to thank our members of Congress for unanimously passing the bipartisan STAR Act. 
  • We then asked you to please reach out to your representatives and ask them to please support FULLY funding STAR. 
  • FALL 2018: They listened and in September 2018, we learned that STAR will be fully funded in 2019! 
  • Now it is time to keep the momentum going!  Let’s thank our representatives!
  • It’s time to approve FULLY FUNDING STAR AGAIN.  We will need to continue to do this each year.
  • Our governments funds the National Institute of Health which then funds the National Cancer Institute.  Historically, the NCI only devotes less than 4% of their budget to children’s cancer research.  Please join us in asking Congress to direct the NCI to re-evaluate and redistribute.  Our children are worth more than 4%! 

Thank Congress for supporting STAR

Today I am writing to simply say thank you for your support of the Childhood Cancer STAR Act – the most comprehensive childhood cancer bill ever to be passed by Congress. Thank you for your support in an effort that was years in the making! I am so pleased that you chose to recognize childhood cancer as a national child health priority and give hope to children currently fighting cancer as well as children who face a lifetime of uncertainty as childhood cancer survivors. 

On behalf of all children diagnosed with cancer, THANK YOU. Thank you for your support, thank you for your leadership on this issue, and thank you for not just saving a life but saving lifetimes for all the children who deserve to live the many years ahead of them. Thank you!

Ask Congress to Fully Fund STAR

The bipartisan Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress and it was signed into law on June 5, 2018, making a landmark moment for constituents like me who care deeply about children with cancer. 

Thank you for supporting this legislation and ensuring its passage into law. The STAR Act will expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for survivors. It also requires the inclusion of a pediatric oncologist on the National Cancer Advisory Board, a critical step toward elevating childhood cancer as a national priority.

Now, I write to ask that you fully fund this law through the appropriations process. The STAR Act authorized $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). Please fully fund this important law in FY2020 so it can fulfill its promise of saving more lives of children with cancer.

Thank Congress for Fully Funding STAR

The bipartisan Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress and it was signed into law on June 5, 2018, making a landmark moment for constituents like me who care deeply about children with cancer. 

Thank you for supporting this legislation and ensuring its passage into law. The STAR Act will expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for survivors. It also requires the inclusion of a pediatric oncologist on the National Cancer Advisory Board, a critical step toward elevating childhood cancer as a national priority.

Thank you for supporting our children through the appropriations process and authorizing $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). 

Thank you for helping this new law so it can begin to fulfill its promise of saving more lives of children with cancer.

Ask your Senators and Representatives to Direct the NCI to reallocate their budget to spend more than 4% on Childhood Cancer research.

Our government funds the National Institute of Health which then funds the National Cancer Institute.  Historically, the NCI only devotes less than 4% of their budget to children’s cancer research.  Please join us in asking Congress to direct the NCI to re-evaluate and redistribute.  Our children are worth more than 4%! 

  • Sadly, government funding is nearly non-existent, so parents are left to fend for themselves.  Of the over $5 BILLION government spending on cancer research, less than 4% actually goes to research children’s cancers.  Let’s put that into perspective-
    • $657 million to breast cancer,
    • $208 million to lung cancer, and
    • only $185 million SPLIT between ALL pediatric cancers.
  • We are not asking for more money, we are simply asking the NCI to reallocate the funds they are already receiving.

Here are some notable facts:

  • More than 1 in 5 children diagnosed with cancer will die post treatment.  

  • Childhood cancer is the LEADING CAUSE OF DEATH BY DISEASE in CHILDREN in this country (2nd only to accidents and more than all other diseases combined)

  • Every day, 43 children will be diagnosed with cancer. (that is over 15,000 per year).  This is in the US alone.

  • More than 40,000 children undergo treatment for cancer every year.  

  • Every day, at least 5 children will die from cancer.  (that is at least 2,000 children per year.)  This is in the US alone.  It is estimated that 250 children die globally from childhood cancer and its “treatment”.