PLATINUM2023

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.

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2022.
Register now

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. Survival comes with a host of emotional and physical challenges including fatigue, isolation, 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. They return to their communities and struggle. 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

Awards

Excellence in Patient Education Award for Marrow Masters Podcasts 2020

CPEN

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Marrow Masters (Podcast) Downloads

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We have incredible analytics through the podcast platform that we can utilize to see the number of downloads per year.

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, including our FREE Marrow Masters podcasts, (we have 9 seasons at this time with 20,000+ downloads within 82 episodes) are VERY popular. We also, since COVID, to help with the isolation and social restrictions, started host interactive Zoom Coffee Klatches and just recently hosted our first Book Club and have plans for more. We also host several 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 strive to add at least one new program per year and have other innovative ideas in the pipeline.

We have worked very hard on developing the most important strategies to achieve these past few years and we are seeing a big difference in raising awareness, funds and increasing programming. We have increased our presence/exposure greatly, which makes more programs possible and helps us reach more patients and their families. We have increased our fundraising efforts on every level. And so excited to report our programming has expanded significantly as well.

Our website speed and Search Engine Optimization(SEO) increased extraordinarily this past year. The core vitals project (Phase 3) has been completed and the overall SEO Score went from 89% to 93%.* (Note: we started the SEO project slightly over a year ago in March 2022 and our SEO score then was 72%.) The page load time went from an average of 4 secs to 1 sec due to core vitals.

We have a much stronger social media presence. (Comparing Jan 2022- April 2022)
• Facebook page reach is up 40% YOY
• Instagram page reach is up 344% YOY
• Message conversations are also up 275% (15 total)

We have also increased collaboration with like minded partners and funders. Our funding from individuals and foundations has increased and our Link Partners are stable, now that is it post COVID. We continuously look for ways to increase the benefits of being a Link Partner and it is working wonderfully. We have updated four of our books, making them more desirable to individuals as well as to hospitals who benefit from their allotment, which is included in their partnership. The need for many, many more speakers has increased our engagement and visibility.

Peer Mentors: 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 have access to many subject matter experts (health care professionals, experts in different fields such as caregiving and standards of care that enable us to provide credible content in order to develop well attended programs. Our constituents trust us and count on us to listen to them and create programs to address their unmet needs. Surveys help us better understand these needs.

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 have seen 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. The increased funding enables up to create more much needed programs.

We have been able to measure, through the numbers registered the dire need for certain topics to be covered. Patients we help are very willing to share what they need and know it will help others in the future. We are always investigating new programming ideas through different platforms, realizing people are mobile and desperate for authentic, factual information from top experts and kind-hearted survivors and caregivers that is accessible anywhere, anytime. It is our honor to meet them where they are and continuously re-evaluate our strategies regarding the best vehicles to deliver psychosocial support.

We have met many of our goals and our progress is significant in all areas. We will continue to work hard and add more goals in the future and ensure we do not let up on the important initiatives we have met and are still striving to exceed to ensure our viability and mission.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

National Bone Marrow Transplant Link
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

National Bone Marrow Transplant Link

Board of directors
as of 04/28/2023
SOURCE: Self-reported by organization
Board chair

Matthew Carpinelli

n/a

Term: 2013 - 2023

Matthew Carpinelli

Wealth Managment for Firefighters, Business Owners and Families

Mike Serra, JD

Bridget Casey, PhD

Juanita McReynolds

Transplant Survivor

Lisa Zajac

Asif Alafi, MD

Karmanos Cancer Institute

Organizational demographics

SOURCE: Self-reported; last updated 4/28/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability