The yahoo group for meningioma patients led me to this website www.brainsciencefoundation.org and when I checked out the site they have what they call the Meningioma Project. Here is what the beginning of their overview says:
"This year, approximately 13,000 people in the United States will be diagnosed with a meningioma, the most common type of all primary brain and central nervous system (CNS) tumors. Despite the fact that current estimates suggest more than 150,000 Americans are living with a meningioma or have been treated for a meningioma, there is little public awareness of and little medical community focus on this tumor type. Many misconceptions surround meningiomas, especially because most (90%) are classified as “benign” tumors. Unlike benign tumors elsewhere in the body, benign tumors in the central nervous system can cause significant permanent disabilities and can be life-threatening. As it is not possible to predict or prevent recurrent growth, most meningioma survivors must monitor their status for life."
This is kinda what I was wanting to do because of the last bullet point, maybe I can become part of this:
About The Meningioma Project The Meningioma Project was created by the Brain Science Foundation to actively fill the void in meningioma awareness and knowledge in the medical community and beyond by:
Promoting innovative thinking, new technology and increased collaboration
Raising funds for research specifically targeting meningiomas
Sharing state-of-the-art information widely with scientists, doctors, patients, advocates and donors
Building partnerships to help patients and survivors live longer, fuller lives
Again, this is mostly about research, but there may be a way to add to this to start giving money to patients to help pay bills and such, I did not find this type of service already offered on the site.
If you go to the site you can join "The Project," read the stories and learn more about meningiomas.
"This year, approximately 13,000 people in the United States will be diagnosed with a meningioma, the most common type of all primary brain and central nervous system (CNS) tumors. Despite the fact that current estimates suggest more than 150,000 Americans are living with a meningioma or have been treated for a meningioma, there is little public awareness of and little medical community focus on this tumor type. Many misconceptions surround meningiomas, especially because most (90%) are classified as “benign” tumors. Unlike benign tumors elsewhere in the body, benign tumors in the central nervous system can cause significant permanent disabilities and can be life-threatening. As it is not possible to predict or prevent recurrent growth, most meningioma survivors must monitor their status for life."
This is kinda what I was wanting to do because of the last bullet point, maybe I can become part of this:
About The Meningioma Project
The Meningioma Project was created by the Brain Science Foundation to actively fill the void in meningioma awareness and knowledge in the medical community and beyond by:
- Promoting innovative thinking, new technology and increased collaboration
- Raising funds for research specifically targeting meningiomas
- Sharing state-of-the-art information widely with scientists, doctors, patients, advocates and donors
- Building partnerships to help patients and survivors live longer, fuller lives
Again, this is mostly about research, but there may be a way to add to this to start giving money to patients to help pay bills and such, I did not find this type of service already offered on the site.If you go to the site you can join "The Project," read the stories and learn more about meningiomas.