H. Res. 69 Designates May 17th of every year as National DIPG Day
Expressing support for designation of the 17th day in May as “DIPG Awareness Day” to raise awareness and encourage the research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general. Diffuse intrinsic pontine glioma (DIPG) affects 200 to 400 children in the United States each year with certain regularity. There are all types of special days, shouldn’t our special children have a day that will call attention to our need to find a cure for a disease that is fatal upon diagnosis?
The resolution has been placed before the House Energy and Commerce Committee. Time is short. If this does not pass in this Congress, we will have to start all over. Please call! Below is a list of the members of the Energy & Commerce, Health Sub Committee who have not cosponsored House Resolution 69. Tell each member:
It is important to call attention to the fact that this horrific disease is the leading cause of childhood death due to brain tumors and is the second most common malignant brain tumor of childhood. The House Resolution #69 would create a national awareness day and would inform the public about how the lack of research into DIPG is affecting our nation’s children. Please vote to approve H. Res. 69.
|Matsui, Doris O.||CA||6th||D||(202)||225-7163|
|Bilirakis, Gus M.||FL||12th||R||(202)||225-5755|
|Carter, Earl L. “Buddy”||GA||1st||R||(202)||225-5831|
|Schakowsky, Janice D.||IL||9th||D||(202)||225-2111|
|Brooks, Susan W.||IN||5th||R||(202)||225-2276|
|Sarbanes, John P.||MD||3d||D||(202)||225-4016|
|Butterfield, G. K.||NC||1st||D||(202)||225-3101|
|Latta, Robert E.||OH||5th||R||(202)||225-6405|
|Griffith, H. Morgan||VA||9th||R||(202)||225-3861|
|McMorris Rodgers, Cathy||WA||5th||R||(202)||225-2006|
|Burgess, Michael C.||TX||26th||R||(202)||225-7772|
Expressing support for designation of the 17th day in May as “DIPG Awareness Day” to raise awareness and encourage the research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.
Whereas diffuse intrinsic pontine glioma (DIPG) affects 200 to 400 children in the United States each year with certain regularity;
Whereas brain tumors are the leading cause of cancer-related death in children;
Whereas DIPG is the second most common malignant brain tumor of childhood;
Whereas DIPG is the leading cause of childhood death due to brain tumors;
Whereas the median survival time is only 9 months post diagnosis with treatment;
Whereas 5-year survival is less than 1 percent;
Whereas given the age at diagnosis and the average life expectancy, the number of life years lost annually because of DIPG is approximately 25,000 years of person life lost (calculated as the number of children diagnosed by average of male and female life expectancy from that median age, 300 × 80 = 25,000 years of person life lost annually);
Whereas prognosis has not improved for children with DIPG in over 40 years; and
Whereas government funding for research for pediatric cancer as a singular designation has been represented by less than 4 percent of the National Cancer Institute budget in any given year: Now, therefore, be it
(1) supports the designation of “DIPG Awareness Day”;
(2) encourages all people of the United States to become more informed about diffuse intrinsic pontine glioma (DIPG) pediatric brain cancer, and the current challenges to the medical research system in designating sufficient research funding for pediatric cancers;
(3) supports expanded research to better understand DIPG, develop effective treatments, and provide comprehensive care for children with DIPG and their families; and
(4) encourages the National Cancer Institute and other research funders to elevate their consideration of mortality rate of a type of cancer as well as the life years lost as significant factors considered during the grant application process.