News

The National Bone Marrow Transplant Link (nbmtLINK) pleased to share some exciting news.  The nbmtLINK is launching a unique program for blood and marrow transplant (BMT) survivors and has been chosen to receive two national awards for its groundbreaking work:

• The nbmtLINK’s new program, Celebrating Second Birthdays, will acknowledge and honor the BMT survivor on his or her transplant anniversary. This program will focus attention on the ongoing needs of transplant survivors and their caregivers and create a community that understands the importance of this "second birthday."  Additionally, honorees will receive a list of resources that will address survivorship issues.  To sign up for this program, click on the following link: http://www.zoomerang.com/Survey/?p=WEB228JGANZH25 or call 800-546-5268 to speak with Cindy Goldman.
• The Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives won the 2008 National Family Caregiving Award, presented by the Met Life Foundation and the National Alliance for Caregiving, in recognition for the nbmtLINK’s outstanding caregiver education resource.  Jean Jones, Program Manager and mother of a transplant survivor, traveled to Nashville to receive the award in July. 
• The Cancer Patient Education Network (CPEN) recognized the nbmtLINK’s groundbreaking partnership with the National Institutes of Health through their “Gold Star” award.  This collaboration has resulted in several successful chronic Graft vs. Host Disease Telephone (cGvHD) Education and Support Groups.  Tiffany Rowe, Director of Operations and coordinator of the cGvHD program, will attend the awards presentation at the CPEN Annual Meeting in October.

If you would like additional information about this award-winning organization, please email info@nbmtLINK.org or call 800-546-5268.

BMT Caregivers' Guide, Second Edition
The second edition of the Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspectives was published last fall. It is the only booklet worldwide that specifically celebrates and supports BMT caregivers.

The role of the BMT caregiver is filled with enormous challenges. Studies have shown that the caregiver role is critical to the health, adjustment, and quality of life of the BMT survivor. Yet, the physical, emotional, and social impact of the disease and BMT treatment on the family often go unacknowledged. In fact, caregivers experience the same, if not more distress than the survivors themselves, and are usually less likely than the survivors to get the help they need.

The practical advice and words of encouragement, wisdom, and hope offered by BMT "care-vivors" in this booklet will help sustain countless numbers of other BMT caregivers as they embark upon this difficult journey. The nbmtLink is proud to offer this valuable resource to the BMT community. Copies of the Caregivers' Guide are available to read or order online or by calling 1-800-546-5268. The publication of this booklet was made possible through the support of the National Marrow Donor Program, LINK Partners, and book sponsors.

Webcast on BMT Caregiving
The first nbmtLINK Webcast, cosponsored by the National Marrow Donor Program (NMDP), is now live online. We are honored to introduce Michelle Bishop, PhD, Research Assistant Professor in the Departments of Medicine and of Clinical and Health Psychology at the University of Florida, Gainesville in a presentation entitled, For Better and For Worse: Impact of Cancer and BMT on Spouse-Caregivers.

A licensed clinical health psychologist, Dr. Bishop has 12 years of experience helping patients and families with the psychosocial aspects of acute and chronic illness and its treatment, particularly cancer and blood and marrow transplantation (BMT). She served as the project coordinator of the largest study to date of the long-term quality of life (QOL) of BMT survivors and their spouses and has conducted an in-depth follow up study of those couples. Dr. Bishop has received several awards for her research and has presented her work at a variety of state and national meetings.

Webcast on BMT Survivorship
Living Now: A Survivors' Conference on Life after Transplant was held by the National Marrow Donor Program in June 2007. The conference was designed for adult bone marrow or cord blood transplant survivors, caregivers, family members and health care professionals who were interested in learning the latest in post-transplant research and information. You may view the presentations at www.marrow.org/livingnow.

Resource Guide en français!
The Resource Guide for Stem Cell Transplant Including Bone Marrow, Peripheral Blood, and Cord Blood has been translated into French. Last year the LINK was approached by Yvan Rousseau, RN, BScN, MBA, Stem Cell Transplant Program Coordinator at McGill University Health Center in Montreal. Yvan wanted to make this important educational resource available to the hospital's French-speaking patients. This booklet is now available to our French-speaking friends around the world! Call 800-546-5268 for additional information.

Telephone Education and Support for cGvHD Patients

Chronic Graft versus Host Disease (cGvHD) is one of the most difficult long-term complications following allogeneic transplant. It is associated with “decreased quality of life, impaired functional status, and the continued need for immuno-suppressive medication and difficulties that arise from this need.” (National Institutes of Health).

Since 2006, the nbmtLINK has recognized the unique circumstances and issues associated with cGvHD by offering telephone education and support groups for individuals living with the disease. In May 2008, the nbmtLINK, The Leukemia & Lymphoma Society, Michigan Chapter, and Amgen Inc. co-sponsored the fifth cGvHD group facilitated by staff from the National Institutes of Health: Sandra Mitchell, PhD, CRNP, AOCN; Kate Castro, RN, MS, AOCN, and Steven Z. Pavletic, MD, Head, GVH and Autoimmunity Unit, Experimental Transplantation and Immunology Branch, National Cancer Institute.

“This spring, the nbmtLINK will convene another cGvHD Alumni Group.  The Alumni Group is reuniting previous cGvHD group members to discuss “Sexuality and Intimacy Post-Transplant.” Heartfelt appreciation and thanks go to Kate, Dr. Mitchell, and Dr. Pavletic for their commitment to these groups. To participate in future groups please contact nbmtLINK at 800-546-5268 or email tiffanyrowe@nbmtlink.org. This program would not have been possible without the generous support of The Leukemia & Lymphoma Society, Michigan Chapter and Therakos, Inc.