Resources

Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Resource Listing

Note: This Resource Listing includes organizations that provide support and information for caregivers. You may find additional resources in the following two booklets and video available from the nbmtLINK:

Resource Guide for Stem Cell Transplant, Including Bone Marrow, Peripheral Blood, and Cord Blood, Friends Helping Friends

Survivors' Guide for Bone Marrow/Stem Cell Transplant, What to Expect and How to Get Through It, by Keren Stronach

Video: The New Normal: Life After Bone Marrow/Stem Cell Transplant

Aplastic Anemia & MDS International Foundation, Inc.
PO Box 310
Churchton, MD 20733
800-747-2820 or 410-867-0242
help@aamds.org
www.aamds.org

BMT Infonet
2310 Skokie Valley Rd., #104
Highland Park, IL 60035
888-597-7674 or 847-433-3313
help@bmtinfonet.org
www.bmtinfonet.org

CancerCare National Office
275 Seventh Ave., Floor 22
New York, NY 10001
800-813-HOPE or 212-712-8400
info@cancercare.org
www.cancercare.org

Family Caregiver Alliance
180 Montgomery, #1100
San Francisco, CA 94104
800-445-8106 or 415-434-3388
info@caregiver.org
www.caregiver.org

Family Voices
2340 Alamo SE, #102
Albuquerque, NM 87106
888-835-5669 or 505-872-4774
kidshealth@familyvoices.org
www.familyvoices.org

Friends' Health Connection
P.O. Box 114
New Brunswick, NJ 08903
800-483-7436 or 732-418-1811
info@friendshealthconnection.org
www.friendshealthconnection.org

Gift of Life Bone Marrow Foundation
800 Yamato Rd., #101
Boca Ratan, FL 33431
800-9MARROW or 561-988-0140
info@giftoflife.org
www.giftoflife.org

Gilda's Club Worldwide
322 Eighth Ave., #1402
New York, NY 10001
888-445-3248 or 917-305-1200
info@gildasclub.org
www.gildasclub.org

Lance Armstrong Foundation
PO Box 161150
Austin, TX 78716
866-235-7205 or 512-236-8820
livestrong@laf.org
www.laf.org

The Leukemia & Lymphoma Society
1311 Mamaroneck Ave.
White Plains, NY 10605
800-955-4572
infocenter@lls.org
www.lls.org

National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
301-718-8444
info@caregiving.org
www.caregiving.org

National Bone Marrow Transplant Link
20411 W. 12 Mile Rd., #108
Southfield, MI 48076
800-LINK-BMT (800-546-5268) or
248-358-1886
info@nbmtlink.org
www.nbmtlink.org

National Family Caregivers Association
10400 Connecticut Ave., #500
Kensington, MD 20895
800-896-3650 or 301-942-6430
info@thefamilycaregiver.org
www.thefamilycaregiver.org

National Marrow Donor Program (NMDP)
3001 Broadway NE, #500
Minneapolis, MN 55413
800-MARROW-2 (800-627-7692)
888-999-6743 (Office of Patient Advocacy)
www.marrow.org

Patient Advocate Foundation
700 Thimble Shoals Blvd., #200
Newport News, VA 23606
800-532-5274
help@patientadvocate.org
www.patientadvocate.org

Rosalynn Carter Institute for Caregiving
Georgia Southwestern State University
800 GSW Drive
Americus, GA 31709
229-928-1234
rci@canes.gsw.edu
www.rosalynncarter.org

Well Spouse Foundation
63 W. Main Street, #H
Freehold, NJ 07728
800-838-0879
info@wellspouse.org
www.wellspouse.org

Across the Chasm, A Caregiver's Story
by Naomi Zigmund-Fisher, BMT Infonet, 2002

After the Diagnosis: How to Look Out for Yourself or a Loved One
by Donna L. Pikula, DDS, MS, 2006

And Thou Shalt Honor: The Caregiver's Companion
edited by Beth W. McLeod, 2002

Being a Cancer Patient's Carer: A Guide
by Wesley C. Finegan, 2005

Cancer Etiquette: What to Say, What to Do, When Someone You Know or Love Has Cancer
by Rosanne Kalick, 2005

Cancer as a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals
by Lawrence LeShan, 1990

Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspectives
National Bone Marrow Transplant Link, 2007

Caring and Competent Caregivers
by R. Moroney, P. Dokecki, J. Gates, K. Haynes, N. Nosher, 1998

Caring for You, Caring for Me: Education and Support for Caregivers
by D. Haigler, K. Mims, and J. Nottingham, 1998

The Caregiver's Companion
by Theola Jones, 2000

The Caregiver Helpbookb
by V. Schmall, M. Cleveland, M. Sturdevant, 2000

Caregiver's Reprieve: A Guide to Emotional Survival When You're Caring for Someone You Love
by Avrene Brandt, 1997

Caregiving: A Step-by-Step Resource for Caring for the Person with Cancer at Home
by Peter Houts and Julia Bucher, 2000

Caregiving for Yourself While Caring for Others
by Lawrence Brammer, PhD, 1999

Caregiving Sourcebook
by Joyce Brennfleck Shannon, 2001

Caregiving: The Spiritual Journey of Love, Loss and Renewal
by Beth McLeod, 2000

Childhood Leukemia: A Guide for Families, Friends and Caregivers
by Nancy Keene, 3rd ed. 2002

Daily Comforts for Caregivers
by Pat Samples, 1999

Everyone's Guide to Cancer Supportive Care: A Comprehensive Handbook for Patients and their Families
by Ernest H. Rosenbaum and Isadora Rosenbaum, 2005

Gifts of Caregiving
by Connie Goldman, 2002

Helping Yourself Help Others: A Book for Caregivers
by Rosalynn Carter, 1995

Help Me Live: 20 Things People with Cancer Want You to Know
by Lori Hope, 2005

Homecare Management of the Blood Cell Transplant Patient
by Cathy H. Kelley, Susan Randolph, Linda McBride, 1998

Living with Childhood Cancer: A Practical Guide to Help Families Cope
by Leigh Woznick, 2001

Love, Honor and Value-A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving
by Suzanne Mintz, 2002

100 Questions and Answers about Caring for Family or Friends with Cancer
by Susannah L. Rose and Richard Hara, 2005

Pebbling the Walk: Surviving Cancer Caregiving
by Steve Reed, 2000

Resource Guide for Stem Cell Transplant, Including Bone Marrow, Peripheral Blood, and Cord Blood
National Bone Marrow Transplant Link, 2006

Share Care-How to Organize a Group to Care for Someone who is Seriously Ill
by Cappy Capossela and Sheila Warnock, 2004

Supportive Cancer Care: The Complete Guide for Patients and Families
by Ernest H. Rosenbaum, MD, et al, 2001

Surviving your Spouse's Chronic Illness: A Compassionate Guide
by Chris McGonigle, 1999

The Professional and Family Caregiver- Dilemmas, Rewards and New Directions
by Jack and Joanne Nottingham, 1990

When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer
Patients by Elise NeeDell Babcock, 1997

Educated Caregiver
by Nancy Van Camp (3 tape series), Life View Resources, Inc., 1998

The Grit and Grace of Being a Caregiver: Maintaining Your Balance as You Care for Others
Willowgreen Productions, 1997

Home Nursing Care: A Practical Guide for Family Caregivers
by G. Timpane and M. Wholey, AYA, Inc., 1998

The New Normal: Life After Bone Marrow/Stem Cell Transplant
National Bone Marrow Transplant Link, 2001

The Internet is a valuable tool. It offers a wealth of information, some helpful, some misleading. Rely on credible sources for information, such as hospitals or medical associations. Proceed with caution when searching the Internet. Evaluate material by asking:

• What is the source of this information?
• Is it factual or opinion?
• Is it based on someone's experience?
• How current is the information?
• Is this site set up to promote a product?

When evaluating the Internet sites, check the address (URL). The final segment of the address offers a general idea of who is sponsoring the web site. Examples include:

.edu. site sponsored by an educational institution
.gov. site sponsored by a government agency
.org. site sponsored by a non-profit organization
.com.site sponsored by a commercial company

Internet Resources for Caregivers:

American Association for Retired Persons
www.aarp.org/families/caregiving

Association of Cancer Online Resources
www.acor.org

Caregiver's Marketplace
www.caregiversmarketplace.com

Caregiving.com
www.caregiving.com

CaringBridge
www.caringbridge.org

Kids Konnected
www.kidskonnected.org

Lotsa Helping Hands
www.lotsahelpinghands.com

MedlinePlus
www.medlineplus.gov/caregivers

National Bone Marrow Transplant Link
www.nbmtlink.org

National Respite Locator Service
www.archrespite.org

Strength for Caring
www.strengthforcaring.com

The Healing Project
www.thehealingproject.org

The Never-Ending Squirrel Tale
www.squirreltales.com

Today's Caregiver Magazine
www.caregiver.com

Resources and Reassurance When You Need Them Most

The mission of the National Bone Marrow Transplant Link (nbmtLINK) is to help patients, as well as their caregivers, families and the health care community meet the many challenges of bone marrow/stem cell transplant by providing vital information and support services.

Founded in 1992, the nbmtLINK is an independent, nonprofit organization funded entirely through the generosity of individuals, corporations and foundations. Taxdeductible contributions are welcomed and vital to ongoing programs and services.

National Bone Marrow Transplant Link
20411 W. 12 Mile Road, Suite 108
Southfield,Michigan 48076
248-358-1886
Fax: 248-358-1889
Toll Free: 800-546-5268
E-mail: info@nbmtlink.org
www.nbmtlink.org

"A Second Chance at Life Is Our First Priority"

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