Congressional Action Alert: Oligo Nation Needs Your Help

Categories: Blog

Take 2! The U.S. Senate!

When it comes to medical research, having deep pockets is crucial. Well, no one has deeper pockets than Uncle Sam, so we are trying to get Congress make Oligo research something that gets funded—which doesn’t happen now. For example, in the last 20 years only one grant from NCI has been focused solely on Oligo and that was in 2007!

We need to have as many of you as possible send the message below to your US Senators. It will take you about 10 minutes, but could have a huge impact on Oligo research.

Here’s what to do:

1. Find your Senators here:
2. Select “Senators”, drop down menu to “contact”
3. Choose State
4. Your two senators should be show, there is a contact link under their pictures
5. Select “Contact me” or “contact me about legislation”
6. Enter your information and leave the message below

Sample Message:

Dear Senator _________,

I am writing to ask you to support NIH research funding for oligodendroglioma brain tumors.

No NCI grant focused solely on oligodendroglioma has been funded since 2007 and only two such grants have been funded by NCI in the last 20 years. The time has come to advance research and help patients, most of whom are 20-40 years old and in the prime of their lives with young children and in leadership positions at work and in their communities. These patients struggle for 3-12 years with little to no effective treatment that can completely remove the cancer. This is particularly important to me because _________ ADD PERSONAL CONNECTION.

Please support including this language in the FY24 Labor, Health and Human Services, and Education Appropriations bill:

Extending the Lives of Oligodendroglioma Patients—There are more than 15,000 people living with an oligodendroglioma brain tumor in the U.S. today. This disease is currently incurable and is typically diagnosed when people are in their 20’s, 30’s and early 40’s—the prime of life. Average life expectancy post-diagnosis is approximately 12 years, although there is a wide range. Despite the cascade of scientific and medical breakthroughs that have followed the advance of genetics, the standard of care for Oligo patients has not changed in over 25 years and neither have patient outcomes. With no advancements in treatment and no government funding provided for oligodendroglioma, the Committee directs the NIH to dedicate research funding toward oligodendroglioma and provide a report within 120 days on progress on this effort to advance translational research.

Thank you for your consideration.


_________ NAME