Voices Against Brain Cancer is proud to introduce the Raise Your Voice Program. (RYVP)
This manual is filled with helpful, up-to-date information on brain cancer covering vast areas from diagnosis to treatment to support. This manual was written by VABC with consultation from Dr. Steven Rosenfeld, Chief of Neuro-Oncology at Columbia University’s Brain Tumor Center.
VABC distributes print versions of this manual at New York-Presbyterian Hospital/Columbia Unviersity’s Brain Tumor Center.
Update from Brain Tumor Center:
The Brain Tumor Manuals are given out at the Symptoms Management Clinic of the New York-Presbyterian/ Columbia Brain Tumor Center. These manuals are a collection of educational materials and references, in the form of a patient/caregiver resource book. The manuals aim to address issues relevant to the patient’s physical and emotional needs. It has been noted that patients and caregivers who receive this information and support throughout the course of the illness cope better overall with the stress and challenges caused by the diagnosis. All new patients who have high grade tumors and will be followed at the Brain Tumor Center are given a manual. Approximately 3-6 manuals are given out each month. Although we still have not had any written feedback about their usefulness at this time, the responses from families and patients have been positive and the general reaction is that “it’s a lot of helpful information”. They are impressed that Dr. Rosenfeld and Voices Against Brain Cancer have taken the time to personally author such a large, comprehensive and informative manuscript.
Given this reaction, it is important to support the need for information by continuing to collect educational materials which addresses issues such as; diagnosis, treatment options, clinical trials, end of life issues, advanced care planning, fertility, sexuality, financial, legal and career concerns. As the clinic interviews patients and begins to see them more frequently and intimately, their needs will become more apparent. This will guide our selection of topics to include for discussion and further research.
As patient longevity is extended through research and treatment, we are seeing that patient concerns are changing from simply surviving the disease to living the healthiest and fullest life possible. This dynamic change will influence the direction of our program. This will enable us to stay in the forefront of addressing patient’s emotional and social needs as well as their needs for basic research and clinical trials.
The goal is that this material will be made available to all patients, families and caregivers. In addition, more specific information will be given as requested or deemed helpful by staff and patients. This ongoing collection of material will be incorporated within the existing resource manual written by VABC with consultation from Dr. Rosenfeld and presented in a format which can be placed in the existing the 3-hole notebook.
Click here to read the Raise Your Voice Manual