Resources for Support The Brain Tumor Quality of Life Program Adult Patients and Families Social Work/Family Support Clinical Social Work Services: Stephanie English, LCSW, OSW-C............................................................................................(919) 668-6178 Maggie McDermott, LCSW ......................................................................................................(919) 681-1687 Children’s Support Services........................................................................................................(919) 684-2913 Neuropsychology Services..........................................................................................................(919) 684-1832 Neuropsychological Technician..................................................................................................(919) 668-2324 Patients and families are encouraged to participate in a wide array of supportive services offered by The Preston Robert Tisch Brain Tumor Center at Duke. Opportunities for support include counseling, support groups, social work services, referrals to national and local support services, and educational/supportive publications.

The following is a list of resources that may be helpful to you during the time that you are being treated here at Duke Medical Center. Please ask any of The brain tumor center family support staff members if you have any questions about how to obtain these services.

Financial Resources Cobra Benefits — This is a form of insurance that may be available to you if you have become unemployed within the last 90 days and had been receiving insurance from your previous employer. You must file for these benefits within the 90-day period. Social Security Disability (SSI) — If your illness will require at least one year for recovery, you may be eligible for disability. SSI is based on income. For more information, you can call your local Social Security office or call (800) 772-1213. Insurance Information Institute — Provides information about all types of insurance, and answers questions that you may have. Go to www.iii.org.

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This information is not intended to be used as a substitute for professional medical advice, diagnosis, or treatment. You should not rely entirely on this information for your health care needs. Ask your own doctor or health care provider any specific medical questions you may have. This information is available at www.cancer.duke.edu/btc > Educational Programs > Your Guide to Care Copyright © 2006 The Preston Robert Tisch Brain Tumor Center at Duke. All Rights Reserved.

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Lodging and Transportation There are several area hotels that are convenient to the medical center. Some of them offer a reduced rate to patients and their families. You will need to contact your social worker in order to take advantage of these rates. Caring House — This is an option available for families who need temporary lodging. Call your social worker for a referral to the house for your first stay. Host Homes — This program, sponsored by Pastoral Services, provides temporary housing for out-of-town families whose relatives are patients at Duke. The program connects families with apartments and homes in the Durham area. Many are free of charge. For more information, please contact your social worker or call (919) 681-4688. There are a variety of programs that offer free air service to cancer patients and their families for treatment. You can contact the National Patient Air Transport Help Line at (800) 296-1217 or Angel Flight at (877) 426-2643.

Duke Resources Discount Parking Passes — When you are an inpatient in the hospital, discount parking passes are available on the first floor of Duke North in the gift shop. A pack of 10 passes are sold for $25.00. Depending on how long you stay, this may be more economical for you. Valet Parking is a $7.00 onetime charge for the day. This is a good option if you do not plan to take your car in and out of the garage while you are an inpatient. If you are an inpatient for more than 30 days at one time, you may be eligible for free parking. Ask your Patient Resource Manager on the inpatient unit for more information. The Patient and Family Resource Center............................................................................ (919) 684-6955 Main level (0) Duke Cancer Center 20 Duke Medicine Circle Durham, NC 27710 Hours: 8:00 a.m. to 5:00 p.m. Monday through Friday Information is available throughout the cancer journey and includes prevention, early detection, disease specific cancers, treatments, side effects, research and clinical trials, complementary therapies, support, emotional care, children’s concerns and end of life care. They offer books, video and audio tapes, periodicals, brochures, magazines, and other written and online information for cancer patients and their families. Health Arts Network at Duke............................................................................................... (919) 684-6124 www.handatduke.org The healing power of art is the focus of this service at Duke. They maintain the frequently changing displays of arts and crafts throughout the medical center, including the display cases in the North-South corridor, on the first floor of the Morris Building, and in the Duke South Main Lobby. They oversee the Touchable Art Gallery in the Eye Center and sponsor the Osler Literary Roundtable, a weekly session featuring poetry and fiction readings by area writers and freewheeling discussions of literature, both fiction and nonfiction. The Roundtable is open to staff, patients, family members, and guests, and meets Fridays at noon for one hour. The Health Arts Network also sponsors a variety of special events throughout the medical center. For more information about particular events and functions, call (919) 684-6124.

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Copyright © 2006 The Preston Robert Tisch Brain Tumor Center at Duke. All Rights Reserved.

Pastoral Services..................................................................................................................... (919) 684-3586 www.dukehealth.org/services/pastoral_services/programs/duke_university_medical_center The Department of Pastoral Services at Duke University Medical Center cares for a wide range of spiritual needs and spiritual injuries, providing a sensitive and inclusive ministry in health crises ranging from problem pregnancies and births to end-of-life decisions and death. A hospital Chaplain is assigned to each patient care area, including the outpatient clinics. The Hospital Prayer and Meditation Room, located in Duke University Hospital (on the sixth floor to the left of the elevators between 6100 and 6300), is open for prayer, meditation, and reflection for persons of all faiths, as well as regularly scheduled religious and spiritual-health related programs. A public prayer ring binder for the inclusion of one’s prayers is on the altar, and a chaplain will pray these prayers daily. Please contact the Pastoral Services office at 919-6843586 to find out about scheduled events or to reach the contact person for your faith group. Sarah P. Duke Gardens.......................................................................................................... (919) 684-3698 Nature provides a healing environment in the Duke Gardens. Adjacent to Duke Hospital, the Gardens are a place to go for escape, for solace, and for a change of pace from hospital routines. Families especially enjoy long walks on peaceful paths, picnics, and watching colorful ducks on the edges of the ponds. The Gardens are open every day without charge. Free public tours are available most weeks, and private docent-led tours may be arranged for a nominal fee. Special tours may be arranged for the physically handicapped. Garden Trolley Tours are available for those concerned about the steep terrain. Trolley tours are offered Monday through Friday from 8:00 a.m. to 4:30 p.m. and must be scheduled. For more information and scheduling tours, call the Gardens’ office.

Brain Tumor Organizations With brain tumors, as with other cancers, there are many different charitable organizations that are dedicated to eradicating brain tumors. We recommend you connect with some of these organizations as soon as possible after diagnosis. They are useful and immediate sources of information, solace, and empowerment. American Brain Tumor Association (ABTA)........................................................................(800) 886-2282 8550 W. Bryn Mawr Ave. Ste 550 Chicago, IL 60631 Website: www.abta.org Email: [email protected] The American Brain Tumor Association (ABTA) provides critical funding to researchers working toward breakthroughs in brain tumor diagnosis, treatment and care, with the ultimate goal of finding a cure. The ABTA is also the recognized resource for comprehensive information and compassionate support for the brain tumor patients, families and caregivers who are living with this disease. National Brain Tumor Society.............................................................. Patient Services— (800) 934-2873 East Coast Office West Coast Office 124 Watertown St., Suite 2D 22 Battery Street, Suite 612 Watertown, MA 02472 San Francisco, CA 94111-5520 Phone: 617-924-9997 Phone: 415-834-9970 Fax: 617-924-9998 Fax: 415-834-9980 Website: www.braintumor.org The NBTS Patient Services Department offers top-notch resources and caring support for everyone affected by brain tumors. They focus their services on patient education, patient support, and community programs. Each month, their Patient Services team responds to more than 1,000 inquiries. They provide patients and their families with easy access to information – online, in print and through their Patient

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Services Line (800.934.2873). They make sure that families and caregivers have the best possible support systems available, including treatment center information, direct services online, access to support groups, local programs, and a trained staff that is available to answer questions from patients, families, and health professionals. Brain Tumour Foundation of Canada....................................................(800) 265-5106 or (519) 642-7755 620 Colborne St., Ste 301 London, Ontario, Canada N6B 3R9 Website: www.braintumour.ca/ Brain Tumour Foundation of Canada is a national, not-for-profit organization dedicated to reaching every Canadian affected by a brain tumour through support, education, information, and research.

Related Organizations Acoustic Neuroma Association, USA....................................................... (770) 205-8211 or 1-877-200-8211 www.anausa.org — email: [email protected] Acoustic Neuroma Association, Canada...................................................... (800) 561-2622 (in Canada only) www.anac.ca Canadian Cancer Society......................................................................................................... (416) 961-7723 www.cancer.ca Central Brain Tumor Registry of the United States................................................................. (630) 655-4786 www.cbtrus.org — email: [email protected] Childhood Brain Tumor Foundation........................................................................................ (877) 217-4166 www.childhoodbraintumor.org — email: [email protected] Epilepsy Foundation of America............................................................................................. (800) 332-1000 www.epilepsyfoundation.org — email: [email protected] Hydrocephalus Association...................................................................................................... (888) 598-3789 www.hydroassoc.org — email: [email protected] National Institute of Neurological Disorders and Stroke......................................................... (800) 352-9424 www.ninds.nih.gov National Neurofibromatosis Foundation (Children’s Tumor Foundation)............................... (800) 323-7938 www.ctf.org — email: [email protected] National Tuberous Sclerosis Alliance...................................................................................... (800) 225-6872 www.ntsa.org Neurofibromatosis, Inc............................................................................................................. (800) 942-6825 www.nfnetwork.org — email: [email protected] NORD (National Organization for Rare Disorders).................................................................(800) 999-6673 www.rarediseases.org

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Pituitary Tumor Network Association......................................................................................(805) 499-9973 www.pituitary.org — email: [email protected] Florida Brain Tumor Association..............................................................................................(954) 755-4307 www.fbta.info BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing 302 Jefferson Street, suite 110 7508 E. Independence Blvd, Suite 106 Raleigh, NC 27605 Charlotte, NC 27227 Phone: (800) 541-4327 (V/TTY) - in NC only Phone: (800) 556-2796 (V/TTY) - in NC only Phone: (919) 715-4092 (V/TTY) Phone: (704) 556-0145 (V/TTY) Email: [email protected] BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc., has served families as a non-profit organization, incorporated under the laws of NC since 1987. BEGINNINGS was established to provide emotional support and access to information as a central resource for families with deaf or hard of hearing children, age birth through 21. BEGINNINGS provides an impartial approach to meeting the diverse needs of these families and the professionals who serve them. von Hippel-Lindau Family Alliance........................................................................................ (800) 767-4845 www.vhl.org — email: [email protected]

Cancer Organizations American Cancer Society......................................................................................................(800) 227-2345 Website: www.cancer.org The American Cancer Society provides general information on treatment and may provide financial support. The National Headquarters can refer you to the chapter nearest your home community. CancerCare, Inc..................................................................................................................... (800) 813-4673 275 Seventh Avenue, Floor 22 New York, New York 10001 Website: www.cancercare.org Email: [email protected] CancerCare is a national nonprofit, 501(c)(3) organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs—including counseling and support groups, education, financial assistance and practical help—are provided by professional oncology social workers and are completely free of charge. Cornucopia Cancer Support Center....................................................................................(919) 401-9333 5517 Durham Chapel Hill Blvd, Suite 1000 Durham, NC 27707 Website: www.cancersupport4u.org Cornucopia Cancer Support Center provides opportunities in a supportive atmosphere for people with cancer, their families, and friends to connect, share, build resources with one another and learn about actively participating in their cancer treatment/recovery process. They offer support groups, classes, and educational forums as part of their “Getting Your Bearings” Support and Education Track as well as their “Tools for Living” Stress and Cancer Track that focuses on stress reduction and relaxation.

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Coping with Cancer Magazine and Website....................................................................... (615) 790-2400 PO Box 682268 Franklin, TN 37068-2268 Website: www.copingmag.com/cwc Email: [email protected] For 25 years, Coping has been a source of knowledge, hope, and inspiration to people worldwide. When you need positive and helpful information that relates to a specific medical condition, Coping can help. Food and Drug Administration, Office of Special Health Issues, Cancer Liaison Program...................................................................................................................................(301) 796-8460 10903 New Hampshire Avenue Bldg. 32, Room 5367 Silver Spring, MD 20993 Email: [email protected] The staff of the Cancer Liaison Program, located in FDA’s Office of Special Health Issues, work with FDA’s oncology medical staff to bring the patient advocate’s perspective into the review of new drugs to treat cancer. The staff also meets with organized patient advocacy groups to listen to their concerns about drug development and to assist them in understanding the FDA drug regulatory process. Calls from cancer patients and their loved ones are routinely answered by the staff to help callers with questions about cancer clinical trials and/or cancer drug development. NIH/National Cancer Institute (NCI)...................................................................................(800) 422-6237 NCI Office of Communications and Education Public Inquiries Office 6116 Executive Boulevard, Suite 300 Bethesda, MD 20892 Website: www.cancer.gov/ The National Cancer Institute (NCI) sponsors a toll-free Cancer Information Service (CSI), open 7 days a week. They are very helpful and offer information about cancer and cancer related resources to cancer patients and their families as well as to the general public. They will be as specific as possible when sending you information. They will ask what type and grade the tumor is and send you the resources pertaining to your individual circumstance. CIS does not diagnose cancer or recommend treatment. They do provide support, understanding and quick access to the latest information on cancer. NCI also has a large variety of free booklets available. To get these booklets, you may call or write to the NCI for a listing of their publications or to order one of their publications; or visit the Patient and Family Resource Center in the Duke Cancer Center — you’ll find many of these publications available to you there. National Coalition for Cancer Survivorship (NCCS).........................................................(301) 650-9127 1010 Wayne Avenue, Suite 770 Silver Springs, MD 20910 Website: www.canceradvocacy.org Email: [email protected] NCCS is a nonprofit organization which addresses the needs and interests of people with cancer, their families, healthcare professionals, and cancer organizations. Founded by and for individuals with all types of cancer, NCCS provides information and referral resources on the physiological, psychological, economic, and social impacts of cancer. They offer a resource network linking cancer survivors nationwide to support resources in their communities. They assist survivors with insurance and employment problems. They advocate nationally for survivorship issues and provide public education and information alerts.

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Other Organizations National Family Caregivers Association ............................................................................. (800) 896-3650 10400 Connecticut Ave. Ste 500 Kensington, MD 20895-3944 Website: www.nfcacares.org Email: [email protected] This association provides education, support, respite care and advocacy for caregivers. Their toll-free information line provides referrals to caregiver support groups as well as information on how to start a caregivers support group. National Hospice and Palliative Care Organization.......................................................... (800) 658-8898 1731 King Street, Ste. 100 Alexandria, VA 22314 Email: [email protected] Website: www.nhpco.org This organization promotes quality care for the terminally ill and their families. Their help line refers callers to local hospices, and they can also inform callers whether a facility is licensed and Medicare certified.

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