Welcome to the August 2019 edition of our nbmtLINK
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. Visit our website often for recorded series, blogs, podcasts, and much more.

Guest Blogger
Jennifer Barish
on the hope and magic
of words...

This lovely lady defines grace, love and the meaning of family.

Photos to the left: top: present day with her boys and hubby and below, walking the halls during treatment.

Moments of quiet reflection were part of everyday life for me from December 2010 until February 2011.  At the time, I was a 37-year-old wife and mother of two young sons; I would immerse myself in daily activities that would make me feel hopeful and calm … activities such as meditation, drawing, listening to music and visiting with family and friends – when I was up to it.

In December 2010, a life-or-death medical diagnosis changed everything for me and my young family.

  Lunch & Learn with the Link

A Telephone Support Program for Patients and Their Families/Caregivers/Loved Ones 
This program is sponsored by
The Leukemia & Lymphoma Society

Wednesday, Sept. 18, 2019
Noon EST (Please note your time zone)

Blood Cancers and CAR T-Cell Therapy, A Discussion with
Dr. Sergio Giralt
This month’s telephone educational and support program will focus on blood cancers in honor of Blood Cancer Awareness Month. Dr. Sergio Giralt, Chief, Adult Bone Marrow Transplant Service, Memorial Sloan Kettering Cancer Center will share information on the bone marrow transplant journey for patients with leukemia, lymphoma, myelodysplastic syndromes, myeloma, and myeloproliferative neoplasms. CAR T-Cell Therapy will be discussed. Jacelyn Herman will also share her experience as a patient who underwent CAR T-Cell Therapy. The nbmtLINK’s licensed social worker, Jennifer Gillette, will facilitate this program. There will be plenty of time for relevant questions related to this topic.

Dial in information is included on the registration form, Technical questions, call Peggy Burkhard, 248-770-5172 or  peggyburkhard@nbmtlink.org .
 
The nbmtLINK’s Jennifer Gillette, LMSW, will facilitate and lead this program. Please note: this session will not cover medical treatments or specific diseases. If you would like to talk to Jen one on one regarding other topics, email Jen at  jennifergillette@nbmtlink.org . There will be plenty of time for relevant questions related to this month's topic.The call in information is contained in the form you use to register. Note: YOU call in to participate. (We do not call you.)

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 DKMS.  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!

DKMS began in 1991 when founder, Dr. Peter Harf, lost his wife, Mechtild, to leukemia. Peter promised her that he would help every blood cancer patient find a matching donor. At that time, there were only 3,000 potential blood stem cell donors available to provide a transplant in Germany. Peter had a vision to create a future where every blood cancer patient has a second chance at life.

Today, DKMS is an international nonprofit organization with offices in Chile, Germany, Poland, the United States, the United Kingdom, and most recently India in partnership with Bangalore Medical Services Trust (BMST). Nearly 10 million potential donors joined the donor pool with the DKMS family and given more than 78,000 second chances to patients diagnosed with a blood cancer or blood disorder. Their worldwide search for new potential donors continues, as many people are still unable to find a suitable match.

It can be very overwhelming to learn that the only chance of survival is a bone marrow or blood stem cell transplant. DKMS is here to help you through this by providing family and friends with a positive way to get involved by organizing bone marrow donor drives, in-person or online, to enhance the search for a matching donor, rally community support and provide hope.Families can incorporate fundraising initiatives as part of their drive. Learn about the different ways you can get involved .   

DKMS also offers a Patient and Family Typing Program, which allows HLA typing for patients and their first-degree family members (siblings, parents, and children) at no cost when insurance is not available or coverage is significantly delayed. The samples are typed in DKMS’s Life Science Laboratory and provided to your transplant teams within
7-10 business days. DKMS developed this program to alleviate financial burdens and aid patients in their transplant journey.  

DKMS invites you to join their private  Make-it-Count Facebook group to share your journey, express frustrations, celebrate achievements, and provide support to others like you. DKMS is here to give you hope for a  second chance at life .

If you would like to learn more about DKMS and the different ways they work with patients and survivors, please visit:  www.dkms.org .

Danielle shares her transplant journey to motivate others to get swabbed and join the pool of potential lifesavers. She found her lifesaving match from the national donor pool and now she wants to ensure every patient can find his/her second chance at life. 
Above: DKMS Donor Recruiter, Jordan Segal, brings smiles to young patients through story-time and Sunny the Bear. 


Marrow Masters
Podcasts


This popular new podcast series will educate patients, caregivers and health care professionals regarding Chronic Graft Versus Host Disease (cGVHD).


Sponsored by Incyte Corporation


Save the Date - Saturday, Oct. 12, 2019

We're proud to be a sponsor of this wonderful cGVHD Summit in Chicago.


Do you Have an Upcoming
Birthday or
Transplant Anniversary?

Want to support our efforts to help other patients and caregivers navigate this journey?


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 Become an nbmtLINK 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 Transplantation and Cellular Therapy (ASTCT)
Barbara Ann Karmanos Cancer Center
Be The Match Patient Support Center
Blood Marrow Transplant Program at Northside Hospital
Blood & Marrow Transplant Program, The Sidney Kimmel Cancer Center at Thomas Jefferson University
Center for International Blood & Marrow Transplant Research (CIBMTR)
City of Hope 
Dana-Farber/Brigham and Women's Cancer Center
DKMS US
Duke Adult Blood & Marrow Transplant Program, Duke Cancer Institute
Froedtert & the Medical College of Wisconsin health network
Henry Ford Cancer Institute Stem Cell Transplant program
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 
Stem Cell Transplantation and Cellular Therapy Program, John Theurer Cancer Center at Hackensack University Medical Center
Spectrum Health Cancer Center
The Leukemia & Lymphoma Society
University Hospitals Seidman Cancer Center
UPMC Hillman Cancer Center
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..

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