We need your help with our "Dynamic Outreach to the BMT Community" project!  We have been successful in creating LINK Partnerships with many of the transplant centers in the U.S.  (See the listing of LINK Partner centers below.)  Many of them utilize our publications and programs.

However, we frequently receive calls from BMT patients and survivors who say, "We wish we had heard about the nbmtLINK before our transplant! And, we wish we had your useful booklets, CD's & DVD's!" 

If you are a BMT recipient or caregiver and would be willing to contact your BMT center by phone or visit, you would be helping to insure that no patient would go without our support.  Training for this outreach effort will be provided through conference calls. Materials will be sent to you directly.  If you are interested, please contact cindygoldman@nbmtlink.org or myrajacobs@nbmtlink.org for additional information.

Do you or someone you know have chronic graft-versus-host disease affecting the lung or skin? If so, then the Chronic GVHD Consortium would like you to know about two studies that are now open and actively looking for participants.

The following institutions have one or both studies open: Fred Hutchinson Cancer Research Center, Stanford University, Vanderbilt University, Dana Farber Cancer Institute, H. Lee Moffitt Cancer Center, University of Minnesota, Washington University, Medical College of Wisconsin, and the National Cancer Institute (Bethesda, MD).  Other sites are in the process of opening the studies: University of North Carolina - Chapel Hill, The Mayo Clinic - Phoenix and Rochester, Weill Cornell Medical College, Cleveland Clinic Foundation, Roswell Park Cancer Institute, and Memorial Sloan Kettering Cancer Center, and should start enrollment later in 2012 or early in 2013.

Lung chronic GVHD

Your doctor may have also called this "bronchiolitis obliterans syndrome" or "BOS", which happens when chronic GVHD involves the lungs. If this diagnosis was made less than 3 months ago, you may be eligible to participate in a research study to test the effectiveness of a three-drug combination (called "FAM" because participants take Fluticasone by inhaler, Azithromycin pills by mouth, and Montelukast pills by mouth) to treat BOS and decrease the need for steroid medications.

You can learn more about this trial online at http://rarediseasesnetwork.epi.usf.edu/cGVHD/research/BOS_6503.htm

orhttp://clinicaltrials.gov/ct2/show/NCT01307462, by emailing Katie Lyon at klaigo@fhcrc.org or calling 866-379-4318.

Skin chronic GVHD causing thickening or scarring

Your doctor may have also called this "cutaneous sclerosis" or "scleroderma" or "fasciitis." If this diagnosis was made less than 12 months ago, you may be eligible to participate in a research study that is testing whether two different treatments are helpful for this condition. Imatinib is a pill taken by mouth once a day. Rituximab is given intravenously once a week for four weeks.If you are enrolled on the trial, you will be randomly assigned to take one of these medications to see if your skin GVHD improves. Both medications will be provided by the drug companies free of charge.

You can learn more about the trial online at http://rarediseasesnetwork.epi.usf.edu/cGVHD/research/CS_6502.htmor http://clinicaltrial s.gov/ct2/show/NCT01309997, by emailing Katie Lyon at klaigo@fhcrc.org or calling 866-379-4318. 

Reassurance, Understanding, and Support when you need them the most.

"Peer Support on Call" is a free service offered by the National Bone Marrow Transplant Link. Emotional support is available through one-on-one conversations with trained peer support volunteers who are bone marrow/stem cell transplant survivors, caregivers and marrow donors. Since they have been through the transplant experience themselves, they understand the patient's and caregiver's feelings and can provide an empathetic point of view.

One caregiver stated that "we really needed to hear the voice of a survivor" after experiencing their first Peer Support Call. A patient found his call from a Peer Support Volunteer "extremely helpful". In fact, he said that "whenever he is dealing with an emotional thing, he thinks back on "what the volunteer said to him". If you would like to request a phone call from a peer support volunteer, please call our office at 800-LINK-BMT (800-546-5268) and ask for Cindy Goldman, or email her at cindygoldman@nbmtlink.org .