Each year, doctors find a brain tumor in over 200 Rhode Islanders and a spine tumor in even more. Nonetheless, these potentially devastating tumors can be considered “orphan diseases” – they afflict relatively few people compared to other medical conditions and so attract fewer resources to fight them. Consequently, as these patients and their families wage what may be the struggle of their lives, many of their needs go unanswered.
In Rhode Island, many tumors of the central nervous system stay under control for years with treatment. Indeed, some patients enjoy a full life after diagnosis. We wish we could say that everyone experiences good outcomes, but for some people, these tumors cause disability or death. How well a person fares after being diagnosed with a brain or spinal tumor depends on a number of things, including:
People who are grappling with a tumor of the brain or spine lack local support groups for interacting with others who understand the special challenges they face.
Patients and their relatives have few sources of Rhode Island-specific information to help them make crucial decisions, find top-quality treatment near home, and locate clinical trials.
Even middle-class, insured families can suffer financial hardship when costly medical bills pile up, particularly if the illness keeps a patient or caregiver from earning a paycheck.
Researchers could use more funding to identify risk factors within the state for these possibly disabling or life-threatening disorders.
Patients with brain or spine tumors await additional clinical trials of promising remedies since drug companies tend to focus on other, more common diseases.
A state that proclaims “hope” as its motto can do better than this. The Rhode Island Brain and Spine Tumor Foundation (RIBSTF) puts hope to work for patients and their loved ones. We strive to make a big difference in the smallest state by offering information, inspiration, support, and practical help for Rhode Islanders who have been affected by these tumors.
Rhode Island Brain and Spine Tumor Foundation was established in February 2008 by Dr. Prakash Sampath, MD, FAANS, of the RI Neurosurgical Institute in response to address the concern of Rhode Island patients and their families when they receive the diagnosis of a potential brain or spine tumor.
The mission of the Rhode Island Brain and Spine Tumor Foundation (RIBSTF) is to provide comprehensive support to those individuals, and families and to enhance their quality of life by providing education, spiritual and financial support, as well as to assist those who conduct research and wish to study in this field. The Rhode Island Brain and Spine Tumor Foundation collaborates with other local and national foundations that serve similar missions. Our purpose is 100 percent charitable.
The RIBSTF achieves their mission with support received through many different avenues. A complimentary support group which is led by a Licensed Clinical Social Worker meets monthly in Providence. Support is provided in a casual, relaxed setting to brain and spine tumor patients, their loved ones and caregivers. On occasion we may have a guest speaker who may be able to provide helpful information and discuss new topics, which may range from new treatments to estate planning.
RIBSTF also has hosted an “Ask The Experts” event. The panel consists of several physicians, and professionals from the community which represent a comprehensive team that a patient and their family would encounter throughout their treatment. We also hosts several fundraisers throughout the year. Our events this year are being significantly impacted due to the worldwide pandemic of COVID-19. The RIBSTF continues to provide support to those in need and will continue to plan and execute fundraising events such as our annual Gala “Faces of Hope.” RIBSTF will be hosting several events to include all age groups and raise awareness.
As many foundations and organizations do, RIBSTF also engages the community as well as small and large businesses alike to support our mission. The businesses and residents of Rhode Island and nearby Massachusetts continue to be extremely generous by providing financial support for our fundraisers, as well as material items that are utilized for silent auctions and raffles.
As the RIBSTF continues to move forward and grow, we set new goals and strive to achieve them. Last years’ goal was to launch the Dr. Scott Wang Patient Assistance Fund. With 12 years of service to the Rhode Island community the RIBSTF has proudly assisted patients. Our goal continues to be to support those who are afflicted with brain and spine tumors and to assist them through the most difficult of times with heartfelt compassion while we continue to raise awareness.
If you or someone you know may be interested in the services provided by the RIBSTF or would like more information about how you can help, please contact us at (401) 272-4177 or visit our website at ribstf.org.
If you would like to contribute to our foundation, checks should be made payable to: RIBSTF and mailed to RIBSTF, 118 Dudley Street, Providence RI 02905.
The Board of Directors of The Rhode Island Brain and Spine Tumor Foundation