By Myra Jacobs
Executive Director,
National Bone Marrow Transplant Link

Since 1992, the National Bone Marrow Transplant Link (nbmtLink) has been serving the bone marrow transplant (BMT) community, working “in the trenches” to provide needed services.

What started in an upstairs bedroom as an all-volunteer organization has grown into an independent, nonprofit organization with a small staff and office located in Southfield, Michigan. Providing educational and psychosocial support, the nbmtLink’s programs and services impact thousands of bone marrow/stem cell transplant patients, caregivers, families, and health professionals across the country and beyond, to every continent.

The mission of the nbmtLink is to help patients, as well as their caregivers, families, and the healthcare community, meet the many challenges of bone marrow/stem cell transplant by providing vital information and support services. Because bone marrow/stem cell transplant is a complicated procedure, it presents difficulties for both patients and family members.

Patients face a life-threatening procedure to treat a life-threatening illness, and the personal demands are extraordinary. In addition to the primary need for excellent, state-of-the-art medical care, patients also need emotional support, compassionate caregivers, educational materials to make informed decisions, and a knowledgeable and sensitive healthcare team. Many families need referrals to financial resources, information about donor searches, or just someone to talk to.

An advocate is often needed to help patients and their families successfully cope with their BMT journey and to know they are not alone. In addition, the second chance at life for a growing number of patients also means a growing need for care after treatment and support for families and caregivers. Depression, fatigue, isolation, financial hardships, and inability to return to work are just some of the issues that families experience post-transplant.

At the heart of the nbmtLink’s service is one-to-one outreach to BMT patients, survivors, caregivers, and families. This is accomplished through the nbmtLink’s volunteer peer support program. The program has been in use for the past 11 years and utilizes a community of BMT survivors who link up with pre- or post-transplant patients, families, and caregivers.

To support its core service, the nbmtLink has created valuable educational materials. These include four easy-to-understand booklets on the coping and caregiving aspects of bone marrow/stem cell transplant: Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives; Resource Guide for Bone Marrow/Stem Cell Transplant, Friends Helping Friends; Survivors’ Guide for Bone Marrow/Stem Cell Transplant, What to Expect and How to Get Through It; and Stem Cell Transplant, A Companion Guide for Breast Cancer Patients.

The nbmtLink’s Emmy award-winning 45-minute video The New Normal: Life After Bone Marrow/Stem Cell Transplant is an incredible story told through the voices of transplant survivors and their caregivers. These unique resources offer patients and families hope and encouragement for returning to a new, normal life.

In addition, it is also important to understand the role of the marrow donor, whether related or unrelated to the patient. If the patient needs to have an unrelated bone marrow/stem cell transplant, then a search in the donor registry is necessary. A matched marrow donor holds one of the keys to the patient’s recovery. We recommend that people interested in becoming bone marrow donors contact the National Marrow Donor Program at 800-627-7692 or visit www.marrow.org.

For peer support, the nbmtLink will link potential marrow donors, related or unrelated, with those who have been there.

To learn more about the National Bone Marrow Transplant Link, call 800-546-5268 or visit www.nbmtlink.org. Booklets may be ordered online or downloaded free.