The following is a description of the ongoing DIPG Advocacy Group Congressional Office Meetings in support of H. Res. 404, the DIPG Awareness Resolution, and other important legislation affecting children with cancer.
Our goals are:
- to gain back the support of all previous cosponsors of the DIPG Awareness Resolution before September 2022
- and as many new supporters as possible to achieve a significant House majority of support for H. Res. 404.
- TO GET A HOUSE VOTE BEFORE THE END OF THE 117TH CONGRESS! LET’S MAKE HISTORY FOR CHILDREN WITH CANCER, AND SPEED CURES FOR DEADLY DISEASES LIKE DIPG.
To quickly send a pre-written message to your Rep in Congress, follow this link, and share: https://www.votervoice.net/ChildrensCause/campaigns/71713/respond
Times of meeting are represented in Eastern Standard Time (EST).
All are virtual/zoom tele-meetings on the link provided below.
Currently scheduling Congressional Office meetings in 2022 for week of July 25 not yet posted.
MEETING CONNECTION INFORMATION (ZOOM PLATFORM)
Meeting ID: 420 295 1007
—>If you haven’t yet, please submit to firstname.lastname@example.org an “SOS” or Statement of Support, a brief letter with your return address (to prove constituency) to your House Representative and state delegation, asking them to please support H. Res. 404, the DIPG Awareness Resolution. This helps us in your absence and for scheduling future meetings with reps in your state, as constituent support is priority for congressional staff in scheduling.
Your Statement Of Support should:
- Be written as a letter addressed to YOUR REP in Congress, and/or Your State Delegation of Representatives, and include your address on the signature to prove constituency. You can find out who your Representatives are by entering your zip code here: https://www.govtrack.us/congress/members
- It can be as short as a paragraph, or as long as you would like. We suggest if including a detailed story for it to not be longer than 2 pages.
- Include your family’s experience with DIPG/childhood cancer, a picture of your child or your family, and/ or your observations as a concerned citizen
- Most importantly, include the “ask”: “Please cosponsor H. Res. 404, the DIPG Awareness Resolution… Thank you for honoring my request as your constituent.”
“To Congressman (Name) and our (State name) Representatives in US Congress:
Please help attach hope to pediatric brain cancer, the leading cause of death in children with cancer. (relation name) and all of our children deserve so much better. Please cosponsor H. Res. 404 in honor of (name) and so many others like him/her across the country who have died a horrible death without hope. These kids deserve more of a fight from us…but how can we unless people are aware? We need your help; thank you for honoring my request as your constituent.“
Your street address,
City State, Zip
In reference to children currently battling a brain tumor, or one who has passed on:
Most people are unaware that brain tumors are the leading cause of cancer-related deaths in children, and that this killer monster DIPG even exists–the 2nd most common brain tumor in children, and the one responsible for the majority of brain tumor deaths annually in children. All by itself DIPG is responsible for a significant portion of the annual childhood cancer death toll, yet there’s been no change in its standard treatment or terminal prognosis since Neil Armstrong’s daughter died of it in 1962.
There’s a hidden world of suffering in our culture which continues unabated due to this lack of awareness. Parents routinely discover after diagnosis that there are no solutions for their child–nowhere on earth they can go to save them–because they don’t represent an adequate “investment incentive.” This cannot continue; it is not in alignment with our core values as Americans, as human beings. By cosponsoring the national DIPG Awareness Resolution, H. Res. 404, you have the opportunity to attract help and hope more quickly for these children by alerting the powers-that-be, by using your power of representation to draw attention to these children who have been dying a horrible death in obscurity for decades…to those fighting for their lives right now. We could save more lives–today!–if more parents, caregivers, more pediatricians were aware of the subtle subset of neurological symptoms which accompany most childhood brain tumors, and access were granted more easily by insurance companies to the definitive diagnostic tool, the MRI.
Please cosponsor H. Res. 404 in honor of (name) and so many others like him/her across the country who have lost their lives in obscurity, or those who are fighting for their lives right now–hoping to live long enough to see a cure or helpful treatment of some kind. These kids deserve more from us…but how can we unless people are aware? How can the powers-that-be know to invest in this fight if they don’t know there is this urgent need for help? We need you to be a voice for us; thank you for honoring my request as your constituent.”
Your name, street address, city, state, zip
Other documents to support your statement:
Our Letter to Congress: download pdf
H. Res. 404 Summary for the Press (general description and background)
DIPG Advocacy Group
Questions? Call Janet at 818-400-2724
To endorse H. Res. 404 and submit a brief SOS, simply fill out the google form: