Welcome to the March 2019 edition of our nbmtLINK E-nnouncement
This Month We Salute Social Workers-
Happy Social Worker Month!
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. Visit our website often for recorded series, blogs sure to inspire and much more.
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Match My Word!
Meet Marrow Donor M.R. Sonntag
A Patient in Need
A Match Indeed...
Inspired by a substitute teacher decades ago, this kind soul never forgot the life lesson shared that day.
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Our next Lunch & Learn is
Wednesday, March 20, 2019, at NOON EST
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FREE Lunch & Learn!
A Telephone Support Program for Patients and Their Families/Caregivers/Loved Ones
Multiple Myeloma Treatments and Updates
Multiple Myeloma treatment has evolved over the years and there are many options to explore in treating this chronic illness.
This month's telephone educational and support program goal is to create a better understanding of the role played by bone marrow/stem cell transplant and minimal residual disease in treating multiple myeloma. This program will include ample time for questions and answers. The call will feature Dr. Stephanie Williams, Division Chief, Adult Blood and Marrow Transplant Program, Spectrum Health Cancer Center. As well, Multiple Myeloma Journey Partner and survivor Barbara Hanson will share coping techniques and offer hope to all in sharing her experience.
Dial in information is included on the registration form, Technical questions, call Peggy Burkhard, 248-770-5172 or
peggyburkhard@nbmtlink.org
.
Join us at lunchtime (Noon EST) from the comfort of your home or desk to learn more about this important topic. 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, please 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.)
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Here are some wonderful programs to share with you. Thanks LLS for all you do to help patients financially and in so many other ways.
Urgent Need Program,
https://www.lls.org/support/financial-support/urgent-need-program
. This program offers $500 once per 12 month period to those under the age of 40 or enrolled in a clinical trial. The other important piece of information is that
someone on the patient’s medical team must apply on their behalf
. It can be a social worker, nurse, medical assistance, child life specialist, etc. but has to be someone on the patient’s medical team. The check usually gets to people within about a week after they are approved for the program.
The Patient Aid Program,
https://www.lls.org/support/financial-support/patient-aid-program
. This program offers assistance of $100 on a one-time only basis to blood cancer patients currently in active treatment or monitoring/surveillance who are US Citizens or Permanent Residents. People need to be prepared to supply their date of birth and social security numbers to receive the assistance.
Check out the Co-Pay Assistance Program website for possible assistance in help paying for medications and health insurance premiums (people can get BOTH paid for under the same grant, unlike some of the other organizations’ co-pay programs) -
https://www.lls.org/support/financial-support/co-pay-assistance-program
. Right now, we only have funding for CLL and myeloma. People do have to meet income requirements of 500% FPL or lower, have health insurance coverage and have the appropriate blood cancer, as verified by their provider. Applicants must make claims on their co pay account at least once every 90 days or the account will be closed and they will have to reapply, assuming there is funding available at that time to reapply to. Here’s a more comprehensive list of what the co pay funds will and will not cover -
https://www.lls.org/sites/default/files/National/USA/Pdf/Co-Pay_Covered_and_Non-Covered_Expenses.pdf
.
Our Susan Lang Pay-it-Forward Patient Travel Assistance funds offer $500 on a Visa travel card that will work only for travel related expenses (and, notably, only at the gas pump, not inside the convenience store) that patients can receive up to every 6 months, as long as we have funding. Currently, our national program is closed, but if you live in Southern California, we do have funding for patients. -
https://www.lls.org/support/financial-support/patient-travel-assistance-program
.
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Check Out Our New Interactive Resource Guide Online
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We’re Getting Real Personal!
Our new Online Resource Guide will make you feel like it was built just for you.
To check it out, visit
www.nbmtlink.org
and click on
Find Help,
located in the top right corner.
The nbmtLINK is excited to launch this new interactive, easy to navigate online directory sure to help patients, families and health care professionals find specific resources based on patients’ individualized needs. Users can search by specific needs, i.e. co-pay, lodging, medication assistance and more.
Concise keywords will enable users to easily find information regarding bone marrow/stem cell transplant, finances, caregiver issues, cGVHD, clinical trials, donor information, fertility, pediatric cancer and more. With more than 170 reliable, trustworthy resources uploaded, users will feel empowered and encouraged that help is available.
We also have a FREE print version available and ready to ship upon request. Please send your request to Cindy Burke, cindyburke@nbmtlink.org
Let us know what you think.
Questions, call 1-800-LINK BMT
Visit www.nbmtlink.org to get started!
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Are you feeling overwhelmed by all of the practical issues that come with a cancer diagnosis, such as understanding health insurance and finances? Our partner @TriageCancer is hosting 3 Triage Cancer Conferences to help individuals diagnosed with cancer, caregivers, and oncology healthcare professionals learn more about navigating cancer survivorship issues.
For more information: http://TriageCancer.org/Conferences
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Meredith A. Cowden Foundation
Presents
2019 Graft versus Host Disease Symposium
7:30 a.m. to 5:30 p.m.
Friday, April 26, 2019
at the
Cleveland Airport Marriott
(Free event for patients and their families)
This unique conference, which focuses on cutting edge research and new treatments, consists of two tracks: one designed for physicians and other health care professionals, and one for bone marrow transplant (BMT) survivors, families and caregivers.
The Meredith A. Cowden Foundation in collaboration with the Case Comprehensive Cancer Center, University Hospitals Seidman Cancer Center, and Cleveland Clinic Taussig Cancer Institute, created the National GvHD Health Symposium in 2010 to raise awareness about Graft vs. Host Disease (GvHD), to promote research to further our understanding of its cause, and to review cutting edge approaches to prevention and treatment.
Attendees are able to interact with some of the world’s leading authorities on GvHD, a complication that affects over 60% of bone marrow transplant patients.
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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.
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Patients, caregivers and health care professionals are amongst those we aim to help through our valued resource books, programs and one on one calls.
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We simply cannot do it without the support of corporations, foundations and individuals willing to make a difference in the lives of others.
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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 Blood & Marrow Transplantation (ASBMT)
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
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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
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2900 Union Lake Rd. Suite 213
Commerce, MI 48382
www.nbmtlink.org
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