E-nnouncement from the National Bone Marrow Transplant Link -  July 2015
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How Sun and Heat Affect People with cGVHD


This is an excerpt from Chapter 4 of "Graft Versus Host Disease: Living with the After Effects of Bone Marrow/Stem Cell Transplant".

Being out in the sun can cause cGVHD to flare up. Many medicines used after transplant - like antifungals and antibiotics - may make you very sensitive to the sun. You need to protect your skin from the sun for the rest of your life. Heat is also a problem. Chronic GVHD destroys your sweat glands, and that places you at risk to overheat. Follow these steps to protect yourself:

*          Stay out of the sun when it is strongest, which is often between 10:00 a.m. and 2:00 p.m.

*          Use sunscreen with a Sun Protection Factor (SPF) of 50+ when you are outside.

*          Wear special sun-protective clothing. There is also a laundry soap additive that will block sunrays from coming through your clothing. It works for up to 20 washings.

*          Avoid high heat.

*          Drink plenty of fluids if you are outside.

*          Do not workout in the heat.

*          Stay in cool or air-conditioned places when it is hot outside.

Chapter 4 written by Sandra Mitchell, PhD, CRNP, AOCN, of the National Cancer Institute in Bethesda, MD.

Call nbmtLINK at 800-546-5268 or go online www.nbmtlink.org to order your copy. 
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Bone Marrow Transplant Caregiver Experience Research Project

A doctoral student at Saint Mary's College of California, who is also the caregiver of a bone marrow transplant patient, is conducting the initial phases of a research project considering how to prepare caregivers to help BMT patients. As you know, a BMT (which include peripheral blood stem cell transplant, stem cell transplant, or cord blood transplant) is an incredibly complex medical procedure. Much of its success depends on the preparation of the family caregiver. Hopefully, your participation in this survey will help improve the process of preparing future BMT caregivers. By completing the survey, you're giving your consent to participate and your responses will remain anonymous.

If you would like to help, the survey can be found at this URL address: https://www.surveymonkey.com/r/BMT_Caregiver_Experience  

Upcoming Free Patient and Family Conferences Presented by Aplastic Anemia & MDS International Foundation


Along with disease and treatment updates, new for 2015, there will be sessions on Bone Marrow Transplants:


July 18th, 2015 San Francisco, CA

September 19th, 2015 Boston, MA

October 24th, 2015, Chicago, IL

November 14th, 2015, Tampa, FL


To register for these events, call (800) 747-2820 or go to www.AAMDS.org/Conferences 


Mark Your Calender; Friday, August 14, 2015, for The Meredith A. Cowden Foundation "Six Courses for a Cure"  


This event will take place at the Sheraton Suites Akron/Cuyahoga Falls in Ohio. The monies raised will fund the 2016 GvHD National Medical Symposium dedicated to research, information, treatments and finding a cure for Graft versus Host Disease, a complication of a life saving bone marrow transplant. For more information, go to www.sixcoursesforacure.com or call 330-864-1978.

We Thank Our Distinguished LINK Partners Who Generously Support the Work of the nbmtLINK!


Barbara Ann Karmanos Cancer Institute City of Hope Dana-Farber/Brigham and Women's Cancer Center Duke Adult Blood and Marrow Transplant Program Fred Hutchinson Transplant Program at Seattle Cancer Care Alliance Froedtert Hospital and the Medical College of Wisconsin Henry Ford Transplant Institute Loyola University Medical Center Mayo Clinic Cancer Center Memorial Sloan-Kettering Cancer Center The Blood and Marrow Transplant Program at Northside Hospital Oregon Health & Science University Knight Cancer Institute  Roswell Park Cancer Institute  Blood & Marrow Transplant Program, The Sidney Kimmel Center at Thomas Jefferson University Hospitals  University Hospitals Seidman Cancer Center  UPMC Cancer Center  University of Iowa Holden Comprehensive Cancer Center   University of Michigan Comprehensive Cancer Center   University of Nebraska Medical Center and Nebraska Medicine  Vanderbilt Ingram Cancer Center  American Society for Blood and Marrow Transplantation  Be the Match  Center for International Blood & Marrow Transplant Research  The General Motors Foundation  The Leukemia & Lymphoma Society  Meredith A. Cowden Foundation Sinai Medical Staff Foundation Anthem, Inc 

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