Support for Legislation Increasing Awareness for DIPG
Al Musella's Comments: (This is his personal views and are not necessarily the views of the Musella Foundation!)
This is from our friends at Oncoceutics and Jack's Angels Foundation. Please contact your representatives and ask them to support this bill to create a national DIPG awareness day. (DIPG is a devestating brain tumor usually found in children)
Posted on: 05/17/2018
We are writing to ask for your support for legislation that will increase awareness of diffuse intrinsic pontine glioma (DIPG), the most devastating type of brain cancer in children.
At Oncoceutics, we are focusing our developmental work on brain tumors with a specific type of genetic mutation called H3 K27M that is present in many brain tumors and that occurs at a high rate (~80% of tumors) in DIPG. Emerging results from clinical trials with ONC201 in patients with H3 K27M-mutant glioma, including the first pediatric DIPG patient treated with ONC201, appear to be encouraging.
We recently became aware of the efforts of a number of parties, including the Jack’s Angels Foundation
and Rep. Stephen Knight (CA), to pass H.Res.69,
which supports the designation of May 17 as “DIPG Awareness Day.” While numerous states already recognize May 17 as “DIPG Awareness Day,” this is the first national legislation dedicated exclusively to DIPG awareness. We at Oncoceutics support this resolution, and we encourage you to support it as well.
See below for information on how you can support this initiative and refer to our website for more detailed information about ONC201 in midline gliomas and DIPG in addition to information on our current clinical trials.
While House Res. 69 –the first national legislation dedicated exclusively to DIPG awareness– has been submitted to the Committee on Energy and Commerce and referred to the Subcommittee on Health, it must leave the committee before it can be voted on by the full House of Representatives.
TAKE ACTION WITH THESE SIMPLE STEPS:
to find out information for your Representative. You can enter your address and get their name and website
Call to express your support and ask them to co-sponsor the resolution
Remember that adding your personal story will make your call or email more compelling. So, with your personal touch, call, write, e-mail or tweet your Congressional Representative and urge them to become a sponsor of House Res. 69!
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