DIPG Day May 17th each year

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.
Representative State District R/D  (area)  Phone
Matsui, Doris O. CA 6th D (202) 225-7163
DeGette, Diana CO 1st D (202) 225-4431
Bilirakis, Gus M. FL 12th R (202) 225-5755
Castor, Kathy FL 14th D (202) 225-3376
Carter, Earl L. “Buddy” GA 1st R (202) 225-5831
Shimkus, John IL 15th R (202) 225-5271
Schakowsky, Janice D. IL 9th D (202) 225-2111
Brooks, Susan W. IN 5th R (202) 225-2276
Bucshon, Larry IN 8th R (202) 225-4636
Guthrie, Brett KY 2d R (202) 225-3501
Sarbanes, John P. MD 3d D (202) 225-4016
Upton, Fred MI 6th R (202) 225-3761
Long, Billy MO 7th R (202) 225-6536
Butterfield, G. K. NC 1st D (202) 225-3101
Hudson, Richard NC 8th R (202) 225-3715
Lance, Leonard NJ 7th R (202) 225-5361
Latta, Robert E. OH 5th R (202) 225-6405
Mullin, Markwayne OK 2d R (202) 225-2701
Schrader, Kurt OR 5th D (202) 225-5711
Blackburn, Marsha TN 7th R (202) 225-2811
Barton, Joe TX 6th R (202) 225-2002
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
Green, Gene TX 29th D (202) 225-1688

The Resolution:

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

Resolved, That the House of Representatives—

(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.

Want to help?

Contact your Representative if they have not cosponsored (click to view cosponsors) and ask them to cosponsor the Resolution H. Res. 69:

49 cosponsors (31D, 18R) 
Brownley, Julia [D-CA26] (joined Jan 30, 2017)
Cárdenas, Tony [D-CA29] (joined Jan 30, 2017)
Comstock, Barbara [R-VA10] (joined Jan 30, 2017)
Delaney, John [D-MD6] (joined Jan 30, 2017)
Dingell, Debbie [D-MI12] (joined Jan 30, 2017)
Eshoo, Anna [D-CA18] (joined Jan 30, 2017)
McCaul, Michael [R-TX10] (joined Jan 30, 2017)
Murphy, Tim [R-PA18] (joined Jan 30, 2017; no longer serving)
Soto, Darren [D-FL9] (joined Jan 30, 2017)
Speier, Jackie [D-CA14] (joined Jan 30, 2017)
Tonko, Paul [D-NY20] (joined Mar 2, 2017)
Hurd, Will [R-TX23] (joined Mar 9, 2017)
Smith, Lamar [R-TX21] (joined Mar 9, 2017)
Kennedy, Joseph [D-MA4] (joined Mar 20, 2017)
Chaffetz, Jason [R-UT3] (joined Apr 20, 2017; no longer serving)
Duncan, John “Jimmy” [R-TN2] (joined May 1, 2017)
Rush, Bobby [D-IL1] (joined May 1, 2017)
Costello, Ryan [R-PA6] (joined May 3, 2017)
Ryan, Tim [D-OH13] (joined May 17, 2017)
McCollum, Betty [D-MN4] (joined May 19, 2017)
Clark, Katherine [D-MA5] (joined Jun 12, 2017)
Moulton, Seth [D-MA6] (joined Jun 12, 2017)
Higgins, Brian [D-NY26] (joined Sep 5, 2017)
Matsui, Doris [D-CA6] (joined Dec 7, 2017)
Perry, Scott [R-PA4] (joined Dec 7, 2017)
Rosen, Jacky [D-NV3] (joined Dec 13, 2017)
Hunter, Duncan [R-CA50] (joined Mar 14, 2018)
Barr, Garland “Andy” [R-KY6] (joined Mar 19, 2018)
Schiff, Adam [D-CA28] (joined Apr 12, 2018)
Donovan, Daniel [R-NY11] (joined Apr 24, 2018)
Fitzpatrick, Brian [R-PA8] (joined Apr 24, 2018)
Gabbard, Tulsi [D-HI2] (joined Apr 24, 2018)
Tsongas, Niki [D-MA3] (joined Apr 24, 2018)
Collins, Chris [R-NY27] (joined Apr 27, 2018)
Engel, Eliot [D-NY16] (joined May 8, 2018)
Jenkins, Evan [R-WV3] (joined May 15, 2018; no longer serving)
Barletta, Lou [R-PA11] (joined May 16, 2018)
Lofgren, Zoe [D-CA19] (joined May 22, 2018)
Grijalva, Raúl [D-AZ3] (joined Jun 13, 2018)
Lipinski, Daniel [D-IL3] (joined Jun 26, 2018)
Vela, Filemon [D-TX34] (joined Jul 25, 2018)
Cohen, Steve [D-TN9] (joined Sep 12, 2018)
Lynch, Stephen [D-MA8] (joined Sep 12, 2018)
Raskin, Jamie [D-MD8] (joined Sep 17, 2018)
Stivers, Steve [R-OH15] (joined Sep 17, 2018)
Langevin, James “Jim” [D-RI2] (joined Sep 25, 2018)
Cartwright, Matthew [D-PA17] (joined Oct 9, 2018)
Joyce, David [R-OH14] (joined Oct 23, 2018)
Perlmutter, Ed [D-CO7] (joined Oct 23, 2018)