News

Each month, the nbmtLINK issues an “Ennouncement” to keep you informed of our latest programs and services.  Please click here to read the current issue or to view past issues.

Telephone Education and Support for Patients Coping with Chronic Graft Versus Host Disease
May, 2010

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 fall of 2009, the nbmtLINK, The Leukemia & Lymphoma Society, Michigan Chapter, and Amgen Inc. co-sponsored the sixth cGvHD group facilitated by staff from the National Institutes of Health, including: 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.

The next group begins on September 23.  To participate in future groups please contact nbmtLINK at 800-546-5268 or email tiffanyrowe@nbmtlink.org.

Research study seeking volunteers - Mental Health Help-Seeking Among Adult Blood or Marrow Transplant Survivors:  A Web SurveyMarch 2010

Have you received a bone marrow or stem cell transplant? Did you cope well with your transplant, or did you get distressed, anxious, or depressed?

Either way, you may qualify for a study by the Behavioral Medicine Research team at Eastern Michigan University. The researchers hope to better understand whether adult bone marrow or stem cell transplant survivors feel a need for help from mental health professionals, where they turn to for help, and how beneficial that help is.

Persons over the age of 18 years who have had a bone marrow or stem cell transplant are encouraged to participate by completing an on-line 30 minute survey. The questions are about current and past emotional well-being and mental health treatment, attitudes to seeking professional help, and social support.

The results of this study may benefit other survivors and their caregivers, because their medical and mental health care providers may use the information to develop more effective treatments for bone marrow or stem cell transplant survivors.  To find out more about the study, please click here: www.emich.edu/psychology/bmed

If you wish to complete the survey, please click here: http://www.surveymonkey.com/s.aspx?sm=9HgYbpykkJasrqoVbSty1w_3d_3d

This study has been approved by the Eastern Michigan University Human Subjects Review Committee. HSRC Approval #091010

For more information about the study, contact the Principal Investigator, Dr. Flora Hoodin (EMU, Dept. of Psychology, 537MJ, Ypsilanti , MI 48197 ; 734-487-1155; fhoodin@emich.edu)

*Disclaimer: Links to research studies and other websites are provided as a service to our users and do not imply endorsement by the nbmtLINK. You should discuss questions about the research, including the risks and possible benefits of participating in the research study, with the principal investigator associated with the study. The nbmtLINK is not responsible for any negative effects you might experience as a result of your participation, including possible breach of confidentiality. The nbmtLINK is not receiving any monetary compensation for making you aware of the study, nor does it have any other vested interest in this study.

2009 nbmtLINK Annual Update Newsletter Now Online
December, 2009

Please click here to read the latest newsletter from the nbmtLINK.  Highlights include:

• Interviews with BMT Survivors, Matthew Neil, a Peer Support Volunteer, and Keren Stronach, author of the upcoming Survivorship Guide;
• An excerpt from our upcoming Voices of Hope and Healing publication;
• A profile of Cindy Goldman, nbmtLINK’s Patient & Caregiver Support Coordinator;
• An article on the nbmtLINK’s recent DC Event; and
• Information about our latest webcasts for parents of BMT survivors. 
• Recognition of our LINK Partners and major sponsors for their support in helping us continue our vital work in 2009.

Are You the Spouse or Partner of a Bone Marrow or Stem Cell Patient?
December, 2009

Spouses and partners of bone marrow/stem cell patients go through the transplant process too! If you are the primary caregiver for the patient, you play an especially valuable role in your mate's support system and treatment team.  That is why we would like to know more about your experiences. 

The Behavioral Medicine Research Team of Eastern Michigan University's Department of Psychology is conducting research about the experiences, challenges and reactions of spouses or partners who are caregivers for bone marrow and stem cell transplant patients.  
 
If you choose to participate in this study, you will be asked to fill out an anonymous online survey that takes about 30 minutes to complete. 
 
You qualify to participate if you are: 

• the spouse or partner and primary caregiver of an individual who has undergone a bone marrow/stem cell transplant between two weeks and two years ago
• at least 18 years of age
• able to read and write in English
• living in the United States

Want to learn more? Click here!
PASSWORD: caregiver

*Disclaimer: Links to research studies and other websites are provided as a service to our users and do not imply endorsement by the nbmtLINK. You should discuss questions about the research, including the risks and possible benefits of participating in the research study, with the principal investigator associated with the study. The nbmtLINK is not responsible for any negative effects you might experience as a result of your participation, including possible breach of confidentiality. The nbmtLINK is not receiving any monetary compensation for making you aware of the study, nor does it have any other vested interest in this study.

Caregivers’ Guide wins Excellence in Patient Education Award!
October, 2009

The nbmtLINK’s Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives won the 2009 Excellence in Patient Education Award from the Cancer Patient Education Network (CPEN).  CPEN previously recognized nbmtLINK for its 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.  If you would like additional information about these award-winning initiatives, please email info@nbmtLINK.org or call 800-546-5268.