National Bone Marrow Transplant Link

Linking & Caring From Diagnosis to Survivorship

aka nbmtLINK   |   Commerce, MI   |  www.nbmtlink.org

Mission

The National Bone Marrow Transplant Link, established in 1992 strives to help patients, caregivers and families cope with the psychosocial challenges of bone marrow/stem cell transplant from diagnosis through survivorship. We provide vital information through valuable resource books, distributed nationally through our partnering cancer (transplant) centers. Many of our resources are also available on-line. We provide specialized and personalized support services as well. Visit www.nbmtlink.org for more information or call 800-LINK-BMT (800-546-5268.)

Ruling year info

1992

Executive Director

Peggy Burkhard

Main address

2900 Union Lake Rd. Suite 213

Commerce, MI 48382 USA

Show more contact info

EIN

38-3027625

NTEE code info

Health Support Services (E60)

Cancer (G30)

Counseling Support Groups (F60)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

For decades patients and caregivers have courageously accepted the challenging treatment of bone marrow and stem cell transplant (BMT/SCT) as a treatment for their disease. Patients and caregivers believe that once the procedure is complete and the required time for hospitalization and recovery have passed, their life will return to normal. Survivalcomes with a host of emotional and physical challenges throughout survival, including fatigue and conditions like Graft Versus Host Disease (GVHD). It can be hard to predict the occurrence of these conditions and challenging to educate at the onset. The problem can lie in meeting patients where they are and when they have time—often patients have months and months of time consuming doctor’s appointments at their transplant center not near their home. The nbmtLINK would like offer ways to better reach patients, caregivers and loved ones where they are with resources, psychosocial and emotional support.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Publications for Patients and Families

The nbmtLINK has 9 publications that can be viewed on our website. Several can be downloaded for free. All Titles include: Guide To Bone Marrow/Stem Transplant: What to Expect and How to Move Forward in English and Spanish. Caregivers' Guide for Bone Marrow/Stem Transplant; Practical Perspectives; Survivorship Guide to Bone Marrow/Stem Cell Transplant: Coping with Late Effects; Graft Versus Host Disease: Living with the After Effects of Bone Marrow/ Stem Cell Transplant; Voices of Hope & Healing; Bone Marrow/Stem Cell Transplant: Frequently Asked Questions: Shareable Coloring Book for Parents and Children and The New Normal documentary, available on You Tube as well as on a DVD and USB drive. As well, we have a free Resource Guide.

Population(s) Served
Adults
Caregivers

The nbmtLINK trains peer support volunteers to provide one-on-one outreach to bone marrow/stem cell survivors, caregivers, and potential bone marrow donors.  Our licensed social worker, Jennifer Gillette guides this program and trains future peer support mentors.

Population(s) Served
Adults
Caregivers

To help individuals and their caregivers meet the challenges of living with chronic Graft vs. Host Disease (a potential side-effect of allogeneic transplant), the nbmtLINK offers the following resources:

(1) The nbmtLINK has partnered with staff from the National Institutes of Health to deliver cGvHD Telephone Education/Support Groups.  The groups will cover the following topics: Overview of Chronic GvHD Manifestations and Treatment; Understanding and Living with Chronic GvHD; Exploring Options for Improving Health and Well-Being; and Facing Forward: Developing Your Personal Plan for Managing Chronic GvHD and Living Well. Each year, the nbmtLINK offers a spring and a fall session, with each session lasting four weeks. The nbmtLINK also hosts "alumni" groups for past group members that would like additional information on topics relating to coping with cGvHD.

Population(s) Served
Adults
Caregivers

nbmtLINK staff and volunteers field calls each day from BMT patients and their loved ones. During these calls, staff members provide helpful information about the BMT and recommend appropriate resources that can help the individual, depending at what stage they are in the process. Staff and trained volunteers also provide information and referral to other organizations and health professionals for help on a wide range of topics, such as donor registration, financial assistance, insurance questions, and specific medical questions.

Population(s) Served
Adults
Caregivers

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The nbmtLINK’s goal is to find ways to make sure that patients are aware of our free available educational materials, some standard and many personalized to meet their "new normal" life post BMT/SCT, for long term survival. The nbmtLINK is working hard to provide an array of programs and resources including recorded webinars, recorded Lunch & Learn sessions, our Emmy winning documentary, “The New Normal” and our many popular books. Our free programs, our Lunch & Learns and webinars utilize national expert provider as speakers, often coupled with the real-life perspective of survivors and caregivers. Recorded programs allow thousands more to access these educational sessions as time permits. We have many caregiver programs to ease the burden and help the dedicated caregiver realize they are not alone. Seasoned caregivers as well as late effect survivors can offer monumental psychosocial support through our peer support program. We also have other innovative ideas in the pipeline.

We are always looking for the best format to meet patients, caregivers and even health care professionals when and where it is convenient and effective. We recently developed a new program called our Lunch & Learn series. We set out to find important topics we could focus on once a month geared toward educating patients, their loved ones and health care professionals. Each Lunch & Learn features an expert doctor or nurse usually from a transplant center. These free recorded sessions offer many the chance to listen in at their convenience and learn about a multitude of topics relevant to their diagnosis and treatment journey.

Patient and caregiver education for long-term is often not a part of the education at discharge from a transplant center. We meet new patients each year when newly diagnosed, during treatment and throughout survivorship. In doing this for decades, we have built strong relationships with health care professionals and experts in the field. Many centers that support us annually, our Link Partners, share our mission with their patients, help us write new books and promote our many diverse resources. Our unique access to patients, through our strong developed mailing lists and collaborative partnerships with like-minded non-profits allows us to reach future patients in need of our services. Often our new patients become our veteran mentors who give back to the newly diagnosed who are often scared and overwhelmed. Our guest blog tab on our website also offers advice from the trenches. Our licensed staff social worker is also available free of charge one on one by phone.

We are seeing a large surge in our website visits. We hear from patients regularly thanking us. What has been amazing to see is the many future new programs that result from our current ones. We have been able to measure, through the numbers registered the dire need for certain topics to be covered. We also survey our participants regularly and ask them for ideas for future programs. They are often very willing to share what they needed for as they also know it will help others in the future . We are always investigating new programming ideas, realizing people are desperate for authentic, factual information from top experts and kind-hearted survivors and caregivers that is accessible for a mobile population. It is our honor to meet them where they are and continuously re-evaluate our strategies regarding the best vehicles to deliver psychosocial support.

Financials

National Bone Marrow Transplant Link
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Operations

The people, governance practices, and partners that make the organization tick.

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National Bone Marrow Transplant Link

Board of directors
as of 12/10/2021
SOURCE: Self-reported by organization
Board co-chair

Randee Bloom, RN, MBA, PhD

n/a

Term: 2013 - 2018


Board co-chair

Donna Posluszny, PhD, ABPP

University of Pittsburgh Cancer Institute

Term: 2015 - 2020

Matthew Carpinelli

Wealth Managment for Firefighters, Business Owners and Families

Sarah Christensen

Director, Patient Education, The University of Texas MD Anderson Cancer Center

Dr. James Connelly

Monroe Carrell Jr. Children's Hospital at Vanderbilt

John Costin

Transplant Survivor

John Jackson

Father of survivor