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08/15/2020 05:03 PM
Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20190&cosponId=31200
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House of Representatives
Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted: February 12, 2020 04:35 PM
From: Representative Mark Rozzi and Rep. Marcy Toepel
To: All House members
Subject: DIPG Awareness Day in Pennsylvania - May 17, 2020
 
This Resolution designates May 17, 2020 as “DIPG Awareness Day” in Pennsylvania, which will coincide with the “National DIPG Awareness Day” sanctioned by the U.S. House of Representatives and Senate.

Brain cancer is the leading disease-related cause of death in children in the United States. DIPG, “diffuse intrinsic pontine glioma”, is the 2nd most common pediatric brain cancer, the deadliest, and is responsible for the majority of pediatric brain cancer mortalities annually in the United States.

It is inoperable and is highly resistant to chemotherapy. Most die within a year
of diagnosis with treatment, and the long-term survival rate is less than one percent.
Families are utterly helpless in the face of this dreaded disease which is emotionally and financially draining.

There has been no change in the standard treatment for DIPG, radiation therapy and palliative care, since Neil Armstrong’s daughter died of it in 1962. Clearly, we can and should do better for our children.

As you can imagine, once a disease is labeled “rare”, research dollars are diverted to other causes representing larger populations. This is especially the case for pediatric cancer research.

Your co-sponsorship of this resolution will attest to the importance of DIPG awareness not only for the obvious humanitarian considerations, but also to encourage increased funding for research, effective treatments and cures from public and private resources.

On behalf of all afflicted children fighting for their lives, and their families, we thank you for your consideration of this co-sponsorship request.


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Introduced as HR865