Groundbreaking National Program Helps Families of Brain Cancer Patients

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A new program developed by the National Brain Tumor Foundation offers information and training to families caring for a loved one with a brain tumor. The free caregiver workshops, offered in partnership with hospitals across the US, include vital information on treatment, managing symptoms at home, coping with side effects, and finding supportive resources in the community.

Families across the United States faced with the challenges of caring for loved ones with brain tumors will now have an opportunity to learn critical care giving skills thanks to a unique program offered by the National Brain Tumor Foundation (NBTF). The National Brain Tumor Family Caregiver Program was launched this year and provides a free day-long training workshop for family caregivers to give them the information and skills they need.

"Many families are unprepared for the often formidable task of caring for their loved one with a brain tumor at home. This class teaches professional-level skills in care giving and is the first of its kind in the country," says Harriet Patterson, MPH, Patient Services Program Manager for NBTF.

This workshop offers a comprehensive look at life after a brain tumor, including all aspects of treatment, coping with symptoms and side effects, understanding and coping with cognitive and personality changes, legal and employment issues, physical rehabilitation, and end of life issues. Speakers at the workshops include a neuro-oncologist, nurses, a neuropsychologist, social workers, a lawyer and more.

“This program has made such a difference for our family. For the first time since my mother was diagnosed, I feel hopeful and prepared for what is to come,” said one participant at a workshop in Boston last fall.

Over 190,000 people are diagnosed with a brain tumor in the United States each year. Many of these people are well enough to leave the hospital but need additional care, leaving families feeling unprepared. In 2004, NBTF launched the National Brain Tumor Family Caregiver Program with a gift from the Argosy Foundation to help better prepare caregivers. Boston is among five cities selected to help launch the program this year; others included Los Angeles, Minneapolis, Charlottesville, VA, and San Antonio, TX. Participants can find out more information or register for the free workshop by calling 1 800 934 2873.

The National Brain Tumor Foundation, founded in 1981, is a national non-profit agency dedicated to supporting brain tumor patients and caregivers and to raising funds for brain tumor research. Other programs include a toll-free information line, comprehensive website, free Search newsletter, publications, a Medical Information Specialist to answer questions, support groups, a peer support network and more. Information is available in English and Spanish and all services are provided free-of-charge.

For more information about the National Brain Tumor Foundation and brain tumors or to register for the workshops, please call the NBTF toll-free Patient Information Line at (800) 934-2873 or visit their web site at http://www.braintumor.org.

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Harriet Patterson