Wishing everyone a wonderful summer.

We have a lot to share in this newsletter. Meet Beth Ades, an incredible survivor who is racing to raise awareness with her beloved pit crew, her husband and daughter. Her story is below along with some slick pictures of their

Blood Tribute Car.

We are also thrilled to offer a new season (Season 13) of our Marrow Masters podcast, a new July Coffee Klatch for those with GVHD and our Lunch & Learn on June 19.

Marrow Masters, Season 13 is now available.

Click here to listen to the trailer for Season 13:

The Side Effects of Bone Marrow/Stem Cell Transplant: Including GVHD

You'll meet several awe-inspiring survivors, a caregiver and health care professionals who will share their best tips and know how regarding the many physical and psychosocial side effects of transplant.

Click here to check out Marrow Masters:

Lunch & Learn

with the LINK

A Telephone Support CALL IN Program for Patients,

Families/Caregivers/Loved Ones

Advocating for Your Care, Rights & Accommodation

as a Bone Marrow/Stem Cell Transplant Patient

Wednesday, June 19, 2024

NOON EST (one hour)

To register, click here: 

 This month, Kathryn M. Smolinski, MSW, JD Director, Legal

Advocacy for People with Cancer Clinic, Associate Clinical

Professor, Wayne State University Law School, will focus on what

benefits, leave, accommodations and rights you have as you

navigate a bone marrow or stem cell transplant and the recovery

process. Jennifer Leal, Board Certified Patient Advocate, AML/Stem

Cell Transplant Survivor, and Clinical Data Scientist, will share her

personal experience and how she advocates to improve health

equity for patients needing life-saving therapies. Jennifer Gillette, LMSW, Staff Social Worker at nbmtLINK will host this program. There will be time for live questions.

To ask a question during the Q & A portion of this program, once the operator says the lines have been opened, hit the star key on your phone and then the number 1. Please address yourself when asking a question in the best way to protect your identity if desired. 

If you have any technical issues related to registering, please email, peggyburkhard@nbmtlink.org or call (248) 770-5172. The call-in information is contained in the form you use to register. Note: YOU call in to participate. (We do not call you.)



This FREE program is intended to provide psychosocial and emotional

support along with health information from national experts regarding

critical topics surrounding cancer and treatments.

This program is recorded and available on our website

one week after airing live, www.nbmtlink.org.

Special Thanks To Our Sponsors: 

The Leukemia & Lymphoma Society, Johnson & Johnson and Incyte

We also thank our Esteemed Link Partners, listed at the end of this newsletter. 

Racing to Raise Awareness

Hundreds of hours go into building a race car long before it turns its first lap. For us, those hours are considered "garage therapy" time, where my daughter, Haylee, learned to turn a wrench at the age of nine and family and friends stop over to lend a helping hand. My husband, Justin, has spent the greater part of the last two decades building and racing stock cars, but our racing roots span longer than the last twenty years. Justin's father raced cars when he and his brothers were little, and my father built race engines and was on a neighbor’s pit crew. It seemed fitting that Justin and I met at the races.

Excitement is in the air the first night of the season. There is the first look at the freshly built and wrapped cars, the smiles on faces as we see race friends we haven’t seen since the close of the last season.

But the season opener of 2021was nothing like we had envisioned. No friendly greetings, no hugs, no excitement...only fear and uncertainty. I had just learned my platelets were critically low, which spurred a trip to the ER and the first of many hospital stays. Shortly after, other blood counts began to drop. I was in and out of the hospital, doctor’s offices, and the transfusion chair with no answers. Each day as I grew weaker, the worry grew stronger. I could no longer attend racing events for my safety, or any other events for that matter. More than seven months later, I received my diagnosis, Myelodysplastic Syndrome, (MDS). The rush to find a stem cell donor was pressing as we prepared to move to another state for my transplant and the 100 days post-transplant treatment. A 10/10 match was located, a 19-year-old, donated her stem cells. I received my stem cell transplant on February 17, 2022, and I am so happy to report that I am doing great!

Each race engine that we have built has a painted block, with Haylee choosing the color, and then named. We’ve had Goldie Locks, Black Betty, and Betty White, to name a few. This year, Haylee was adamant to have the race engine block painted red, and so O+ was its name. I said to Justin, “Wouldn’t it be fun to have an entire car dedicated to my blood donors and my stem cell donor?” His response was, ‘I’m in 100%’. Over the winter, the Blood Tribute Car was born, featuring NMDP and Life Serve (the blood donation centers in my state) to pay tribute to the wonderful people who work for these organizations, the blood donors, and my stem cell donor. Without all of them, I wouldn’t be alive today.

She’s built and wrapped and maybe the most beautiful car I have ever seen. And so, three years later, I am stepping back into our racing world. I love seeing Haylee learn about racing and getting dirty. Justin is busy patiently showing her how to set tire pressure and torque lug nuts, a smile brimming on his face. And this mama's heart about to explode with love watching the two of them together. Our passion and respect for the sport of racing is now met with our new passion, helping others through their transplant journey.

Our goal is to reach others, possibly some who have never thought of donating blood or getting on the bone marrow registry through a real-life billboard set to a speed of 100 mph. If we can help educate and take the scary stigma out of blood and stem cell donation to help even one person, it will all be worth it!

Seen above top left: Beth with her husband Justin and their daughter Haylee.

Below: Beth proudly seen next to their incredible Blood Tribute Car.



Our next Coffee Klatch is set for

Wednesday, July 10, 2024

2:00 pm to 3:30 pm EST

via Zoom.

Join us for a special Coffee Klatch intended for survivors

with Chronic Graft Versus Host Disease. This Coffee

Klatch will allow for sharing and helping each other

navigate the bone marrow/stem cell transplant journey

as it relates to cGVHD. Learn how others cope, utilize

resources for this rare disease, stay positive and tackle

their cGVHD.

This free Zoom interactive small group led by Jennifer Gillette, our

licensed staff social worker, will inspire from the comfort of your

home or office. Lew Christie, a double transplant survivor who has

cGVHD, will co-host this program.

To sign up for this event, please click here.

Zoom Format—credentials to be sent to confirmed participants

in advance. It is important you reply

immediately (if you receive an email) to the email sent so that

we can confirm your interest. We send a special package to all

confirmed participants.

Space is limited. Please know that we will do our best to accommodate

as many participants as possible. New registrants will be considered first.

Please do not sign up if you cannot attend.

Questions regarding this program can be sent

to peggyburkhard@nbmtlink.org.

SPECIAL THANKS TO OUR SPONSOR:

Incyte