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  • Writer's pictureCarla

Clare and Congress

May is Brain Cancer Awareness Month. May 17 is DIPG Awareness Day in several states across the country. We are lucky enough to have these dates designated because other families worked to get them recognized. Now, we are the ones who have to work to get more awareness and recognition for DIPG. Before May closes, will you consider being a part of the change?

Diffuse Intrinsic Pontine Glioma (DIPG) has been called the “worst of the worst” among the various types of cancer. It remains the only cancer with a 0% survival rate.

Medical advances in the past 40 years have greatly improved the survival rates for children diagnosed with most types of cancer. For some cancers, the medical advances have been extraordinary. For example, the survival rate for children with acute lymphocytic leukemia has increased from less than 10 percent in the 1960s to nearly 90 percent today. Overall, the survival rate for children with cancer is around 83 percent.

But these medical advances have done nothing for children with DIPG. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago. There is still no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis. (Source: Michael Mosier Defeat DIPG Foundation)

We need to do better. We need to do more for kiddos diagnosed with DIPG.

Just last week the U.S. Senate passed a resolution (S. 223) introduced by Senator Marco Rubio establishing the support for the designation of May 17, 2019, as "DIPG Pediatric Brain Cancer Awareness Day," to raise awareness of and encourage research on diffuse intrinsic pontine glioma tumors and pediatric cancers in general.

There is a U.S. House Resolution (H. Res 114) which asks to bring awareness to DIPG and also requests that government funded organizations, such as the National Cancer Institute, who allocate research funds take the mortality rate and loss of years into consideration. A child who dies from cancer loses 70 potential life years on average compared to 15 potential life years lost for adults.

Representatives David Joyce (R-OH) and Jackie Speier (D-CA) jointly re-introduced the bill to the 116th Congress. We are so honored that US Representative David Joyce has re-introduced this bill in honor of our sweet Clare. We need your support to make sure that this initiative advances to a vote.

How Can You Help?

2.) Send your US Representative this letter asking them to co-sponsor the resolution

  1. You can send through the mail or copy the text of the letter and submit on their website

3.) Contact your US Representative on Social Media, use #Moonshot4kids as your hashtag

The more representative support we receive, the quicker this will head to a vote. When it is approved, we will succeed in generating more awareness for DIPG. In addition, organizations will have to review the dismal mortality rate when awarding research funding.

Thanks for being a part of the change!

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