Welcome to the August 2018 edition of our
LINK E-nnouncement!
We strive to educate, inspire and offer support and hope to patients, caregivers and health care professionals navigating the bone marrow transplant journey.
It is truly our honor.
Our July Guest Blogger:
Rob Minton
We met Rob and his incredible family in person a few years ago. Today, Rob, far right in the photo here is healthy, a new grandpa several times over and giving back every chance he can. You will also meet Clint, left, his incredible donor.
Prepare to be inspired by this duo!
Save the Date!

The nbmtLINK will host a FREE webinar on Wednesday,
September 12 at Noon EST.



Transplant Treatment Journey: Bone Marrow/Stem Cell Transplant Basics and Clinical Trials


This free webinar will describe the process of bone marrow/stem cell transplant, the steps in preparing for transplant, clinical trial options and coping skills. There will be multiple resources for additional help sure to help patients and caregivers navigate the entire journey. There will be plenty of time for questions as well.

This program was made possible by the generous support of: 
National Marrow Donor Program/Be The Match
The Leukemia and Lymphoma Society
Jazz Pharmaceuticals
Gilead Sciences, Inc.
The Karmanos Cancer Center's Blood and Marrow Stem Cell Transplant Program

Questions, contact Peggy Burkhard, peggyburkhard@nbmtlink.org
 
Important Podcast on VOD

Many may be familiar with graft versus host disease (GVHD) however, veno-occlusive disease (VOD), otherwise known as sinusoidal obstruction syndrome (SOS), is also one of the most frequently encountered complications after stem cell transplantation.

Listen in as our Link Partner colleagues from The Leukemia & Lymphoma Society (LLS) speak with Dr. Joseph Antin, Chief of the Stem Cell Transplant Program of the Department of Medical Oncology at Dana Farber Cancer Institute and Brigham and Women’s Hospital in Boston, Massachusetts. This episode will cover the difference between a bone marrow and stem cell transplant, treating VOD, autologous and allogeneic transplants, how doctors choose the cell source collected from the blood or the marrow that is best for the patient, VOD as it presents in pediatric and adult patients and interesting findings about herbal tea induced hepatic veno-occlusive disease.

Next Free Triage Cancer Conference in Reno!
The nbmtLINK is happy to be a sponsor of Triage Cancer’s cancer survivorship conference series! The Triage Cancer Conferences provide cancer survivors, patients, caregivers, and oncology healthcare professionals, with valuable information about navigating practical cancer survivorship issues. Learn more about navigating health insurance, dealing with employment issues, and managing finances.
Register for the next FREE conference in Reno, NV on September 22, 2018
(Travel assistance available until Aug. 20, 2018)

Link Partner Spotlight

Check it out! Each month, we will be spotlighting a Link Partner. Link Partners are centers and allied organizations who support our mission in so many ways. See the bottom of this newsletter for a complete list. This month we thank and showcase Nebraska Medicine. This new monthly feature will provide best practices, tips, special events and much more.

If you are a Link Partner, be sure to email peggyburkhard@nbmtlink.org
to reserve your spot!

Spotlight on
Nebraska Medicine 
When going through cancer treatment it is important to remember to take care of all aspects of your health, including your emotional, mental and spiritual well-being. Many health systems are working to address the holistic needs of cancer patients, and Nebraska Medicine is no different. To that end, we have established a Survivorship Clinic to help our patients continue healing even after their treatment ends. 
 
Our  Survivorship Clinic  is designed to help adult patients transition from active treatment to day-to-day living as a cancer survivor. We also address emotional and physical challenges such as fatigue, heart disease, bone loss and quality of life. In addition, Nebraska Medicine has recognized the role art can play in healing with our unique Healing Arts Program. Through diverse art opportunities and experiences, the Program provides environments that support and comfort people. The Healing Arts Program combines art elements that help to reduce pain perception, anxiety, stress, loneliness and depression. It also provides new insight and clarifies feelings about a cancer diagnosis and treatment. While these programs are unique to Nebraska Medicine, there are numerous other facilities across the nation that are addressing the need to care holistically for the patient, by providing emotional support services. Patients and their loved ones should actively seek out these support services in order to continue the healing process while going through treatment.
 
Nebraska Medicine brings more than 200 world-leading specialists and researchers together to transform the cancer experience. Our team of experienced cancer specialists has been at the leading edge of blood and marrow transplantation (BMT) for decades, helping to bring a new lease on life to thousands of patients. Since 1983, Nebraska Medicine’s adult and pediatric Blood and Marrow Transplant Program has performed transplants on over 5,000 patients, making it one of the busiest transplant programs in the world. The program pioneered the use of peripheral blood stem cells for transplantation. It continues to be a national leader in the care of patients with various diseases such as lymphoma, leukemia and myeloma. At the forefront of advances, Nebraska Medicine is one of only a handful of programs in the country that offers the newly FDA-approved, Chimeric Antigen Receptor (CAR T-cell) therapy. Our multidisciplinary approach is led by hematologists and medical oncologists who specialize in BMT therapy and research to ensure the latest technical advances, clinical approaches and trials are available for each patient. In addition to BMT-specialist physicians, a team that includes transplant physicians, nurse case managers, social workers, nutritionists and more, surrounds each patient throughout their cancer journey, offering support and care every step of the way.
 
Anchored by the Fred & Pamela Buffett Cancer Center, the Nebraska Medicine Cancer Network offers four locations throughout the Omaha metro area, bringing exceptional cancer care close to home. The Center is a collaboration between the University of Nebraska Medical Center (UNMC) and Nebraska Medicine. As the only NCI-designated cancer center in Nebraska, the Fred & Pamela Buffett Cancer Center provides the best in science and clinical practice. By harnessing the most advanced biomedical and technological tools available, we are increasingly able to identify the drivers behind cancer and create precise therapies that improve outcomes. Through the use of genomics and other new diagnostic tools, we are employing precision medicine to customize therapies and care for each cancer patient. 
 
The Fred & Pamela Buffett Cancer Center includes 98 laboratories dedicated to oncology research within a ten-story research tower and an eight-story clinical tower with 108-inpatient beds, surgical suites, a radiation oncology center, and a multidisciplinary outpatient center which operates 24/7, 365 days a year.
How We Help Others!
We are a phone call away for patients and their loved ones. From one on one peer support to scheduled call series and webinars, we are ready to ease your burden.
Patients, caregivers and health care professionals are amongst those we aim to help through our valued resource books, programs and one on one calls.
We simply cannot do it without the support of corporations, foundations and individuals willing to make a difference in the lives of others.
We invite you to consider taking the following survey provided by an optometrist and PROSE provider at the University of Illinois at Chicago who has a very active cGVH clinic. This group is working with a study group researching patients’ experiences with management of their disease. The results will be presented at national research meetings and will be available to the LINK as well. The study is approved by the University of Illinois IRB and is part of a multi-site SCOPE study group. Previous research projects have involved scleral lens prescribing patterns and patient experience with keratoconus.

We Invite You to Become A Link Partner!
Link Partners include cancer centers and allied partners who annually support our mission of providing psychosocial support to patients, caregivers, their families and health care professionals dedicated to helping people navigate a bone marrow transplant. If you would like to learn more about the many benefits (books, programs, hyperlink on our website, bookmark inclusion) to being a Link Partner, please do not hesitate to contact us at (248) 358-1886. Want a free bookmark which lists our many Link Partners? Let us know and we will send you one!

American Society for Blood & Marrow Transplantation (ASBMT)
Barbara Ann Karmanos Cancer Center
Be The Match
Blood and Marrow Transplant Program, John Theurer Cancer Center at
Hackensack UMC
Blood Marrow Transplant Program at Northside Hospital
Blood & Marrow Transplant Program, The Sidney Kimmel Cancer Center at Thomas Jefferson University
Center for International Blood and Marrow Transplant Research (CIBMTR)
City of Hope 
Dana-Farber/Brigham and Women's Cancer Center
DKMS (formerly Delete Blood Cancer)
Duke Adult Blood and Marrow Transplant Program
Froedtert Hospital and the Medical College of Wisconsin
Henry Ford Transplant Institute
Incyte Corporation
Memorial Sloan-Kettering Cancer Center
Meredith A. Cowden Foundation
Nebraska Medicine
Oregon Health & Science University Knight Cancer Institute
Roswell Park Cancer Institute
Seattle Cancer Care Alliance
Siteman Cancer Center at Barnes-Jewish Hospital/Washington University School of Medicine 
Spectrum Health Cancer Center
The Leukemia & Lymphoma Society
University Hospitals Seidman Cancer Center
UPMC CancerCenter
Vanderbilt Ingram Cancer Center
Thank your for being a friend of the nbmtLINK. We simply could not do this without you. If you can support our efforts at this time, we thank you in advance. Every dollar helps. Enjoy the rest of the summer with lots of time to recharge and enjoy life.

Sincerely,

Peggy Burkhard, Executive Director
(248) 358-1886
National Bone Marrow Transplant Link