We just recieved this very important message from Matthew Alsante, Executive Director of the SFA. Please do us a favor and DON'T just read this, PLEASE REACT!!!
THANK YOU
Dear Sarcoma Foundation of America Members,
I would like to thank all of you for being members of a great organization. I would also like to ask for your help with the following crisis:
Funding for cancer research from the federal government has remained stagnant in the last few years and has decreased if you factor in inflation. Due to current cuts in federal funding to the National Cancer Institute (NCI), there is a decrease in funding to groups dedicated to running cancer clinical trials. The cuts have been disproportionately levied against current and future sarcoma research trials.
The NCI has mandated budget cuts to the Southwest Oncology Group (SWOG) and to the Eastern Cooperative Oncology Group (ECOG). SWOG and ECOG have decided to completely and totally cut their current sarcoma based trials and those planned for the
future. The Sarcoma Foundation of America considers this discrimination against sarcoma patients, since sarcoma is being singled out instead of choosing proportional cuts across all cancer types. There is a history of discrimination against funding for rare diseases such as sarcoma and there has been an uphill battle to get the funding and support that it currently has. Sarcomas are a little more than 1% of all adult cancers. We ask for your support and your voice for those who are already suffering from a cancer with no cure and few treatment options. We feel that a grave injustice is being done to the 10,000 to 15,000 patients each year who are diagnosed with sarcoma.
I strongly urge those who read this to contact your Senators and Congressman and insist they reverse the trend of decreased funding for cancer research. Ask them to actively sponsor and support legislation that will continue to support the strides made in cancer research and not slow down or decrease it as the current and future budget proposals will do. The rarest cancers with the smallest voices are being unfairly targeted and we must not stand for this. Together we can make a change!
Newsletter Winter 2006
There is a nice article in the newsletter about THE EXCEPTIONALLY RARE DISEASES ACT Advocating for Sarcoma Patients in Congress
|
The National Cancer Institute over the years has dedicated a small amount of money to targeted research efforts at a handful of medical centers in the United States with programs centered on the 1% of cancer patients who develop sarcoma. With the NCI budget being $5.7 billion, a similar proportion (1%) targeted to help find new therapies to help sarcoma patients might be expected to be $57million. It is hard to estimate, but review of data presented for the public on the NCI website indicates no more than $5-10 million per year is being outlayed for NCI sarcoma research programs. Therefore, there is a dire need for increased NCI funding to at least have outlays that are equitable to the number of Americans struggling with this disease.
Regarding the actual research being done, like with other cancers, investigators are beginning to search for the genetic basis of sarcoma and looking for "targets" or weaknesses to exploit with new therapeutic approaches. The numbers of investigators are few because researchers, to be frank, tend to go where the money is. We'd like to make sarcoma an "attractive" research interest for these folks by having the Sarcoma Foundation of America become a nonprofit sector source that researchers can approach for funding.
What is needed are funding programs to build on discoveries of targets of opportunity that are arising from genetic research in sarcoma. Sarcoma may be ideally suited to immunotherapy approaches, for example. If we embarked on programs to explore "general" therapies against common targets in all sarcomas, as well as specific programs in the dozen or so sarcoma subtypes, a 5 year $15 million effort would allow a quantum leap in options for sarcoma patients compared to what they have available now. We have ambitious goals of raising a sizable percentage of this amount through our fundraising efforts. NCI's PRG website.
What is Undifferentiated Sarcoma?
Sarcomas are cancers that begin in the body's connective tissues. They are often divided into two groups. One group is bone cancer which begins in the hard part of the bone. The other group is soft tissue sarcomas which start in muscles, fat, fibrous tissue, blood vessels, nerves, or other supportive tissues of the body. Some of these rare sarcomas include fibrosarcoma, liposarcoma, leiomyosarcoma, synovial sarcoma, hemangiosarcoma and undifferentiated sarcoma.
Undifferentiated sarcoma is a very rare childhood cancer.
What are the symptoms of Undifferentiated Sarcoma?
Symptoms of undifferentiated sarcoma vary according to the area of the body that is involved. Pain or swelling in that area may be seen. When the tumor gets large enough, it may start to press on other organs and cause swelling, pain, or compression (blockage). If other organs are compressed, they may not work as well as they should. For example, if a sarcoma occurs in the abdomen, it may press down on the intestines and cause constipation.
How is Undifferentiated Sarcoma diagnosed?
Diagnosis of undifferentiated sarcoma is made by biopsy of the tumor. This is a surgical procedure done under general anesthesia so the child is not conscious and will not feel any pain. A piece of the suspicious bone or tissue is removed and looked at under a microscope. Additional tests are performed to see if the disease has spread. These may include a skeletal survey (X-rays of all the bones), radioisotope scans, CT scans, MRI and a bone marrow aspirate and biopsy.
What is the treatment for Undifferentiated Sarcoma?
No single method of treatment appears to be successful alone. A combination of surgery, chemotherapy and perhaps radiation is most often used. The child's treatment plan will be based on the location of the tumor, whether the tumor has spread, and whether the tumor was completely removed by surgery.
What is the prognosis for Undifferentiated Sarcoma?
The prognosis for undifferentiated sarcoma is related to the tumor location, if the tumor has spread and if the tumor was completely removed at the time of surgery. With the combined treatment of surgery, chemotherapy and radiation, survival rates are improving.
Written 11/05
Cincinnati Children's Hospital Medical Center |
