Happy October!

Welcome to Fall. We are working on Season 15 of Marrow Masters, which will cover CAR T Cellular Therapy and be available later this month. We also have a new webinar being finalized and set for

Dec.11, 2024, starting at NOON EST until 1:30 pm re Chronic GVHD.

Last but not least, meet Beth Ades, more below, who shares her wonderful experience with a free program called Look Good Feel Better Live!, a virtual series of beauty-related workshops.

Link to apply for free services below.

Lunch & Learn

with the LINK

A Telephone Support CALL IN Program for Patients,

Families/Caregivers/Loved Ones

Screenings, Immunizations, Tests and Other Appointments to Remember to Schedule Before, During & After a Bone Marrow/Stem Cell Treatment

Wednesday, Oct. 16, 2024

NOON EST (one hour)

To register for free, click here: 

This month’s call-in program, featuring Dr. Rupin Shah of the Adult Bone Marrow & Cellular Therapy Program at Corewell Health West will focus on the importance of post-transplant health—getting up to date on immunizations, a colonoscopy, dermatology appts, prostate screenings, a mammogram, and more to stay healthy and to screen for secondary cancers caused by cancer treatment. Dental needs as well as vision screenings should be maintained, especially if GVHD is a possibility. Angela Keith, a survivor, will share her story and experiences, offering tips and inspiration. Jennifer Gillette, our licensed staff social worker will host this call. There will be plenty of time for live questions.

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 participate. (We do not call you.) This program is recorded and transcribed and available on our website within one week after airing live. (www.nbmtlink.org)

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.

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. 

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. 

Look Good Feel Better

by Survivor Beth Ades

Attending the Look Good Feel Better Live! FREE virtual workshops in 2023, offered through the Look Good Feel Better Foundation, was one of the best things I’ve done for myself. The instructors of each class are professionals in their field and passionate about helping. And help was just what I needed! After intense chemotherapy and a stem cell transplant, I felt anything but looking good. My body had just overcome something so difficult that it had earned the right to look as rough as it did. So, when I heard about the Look Good Feel Better Live! Virtual workshops, I was eager to learn more. I signed up for all available classes. 

After transplant, I didn’t recognize myself in the mirror. I had lost my hair. My skin was thin, dry and had a grey tint to it. My frame was frail and weak. My nails had trauma marks and had stopped growing. I felt like an alien in my own body. I desperately wanted to feel pretty, or anything other than what my reflection showed. 

I jumped right into classes with both feet, and icky toenails. To start with, the instructors were adamant about germs, showing participants like me how to use products safely and offered single-use applications. I was invited to practice what I learned, right along with the instructor and was given plenty of time for questions and answers. I felt cared for by the instructors with a renewed sense of belonging in my new post-transplant world alongside beautiful, strong women going through similar circumstances. 

What I learned was more than just how to apply products or dress well, but I gained the tools I so desperately needed to take back a part of myself. Something as simple as the correct lipstick application connected me with divine femininity and savage inspiration. I walk a little taller on the days I choose to celebrate the new me, taking all that I have learned from these classes, and excited to show off my fresh self-pedicure. 

Look Good Feel Better Live! virtual workshops provide valuable information and connection for women undergoing cancer treatment. Virtual workshops offer one-hour long live instruction and tips for dealing with appearance-related side effects of cancer treatment. 

Look Good Feel Better licensed beauty professional volunteers guide a group of participants in skin care and makeup application, the use of wigs and other head coverings, nail care, or body image and styling workshops to help manage appearance concerns.

To register for free, visit Virtual Workshops - Look Good Feel Better

Beth and her husband Justin seen above at the recent NMDP Gala looking good!

Still time to Register for our FREE Webinar: Owning Your Survivorship Plan Post Allogeneic Transplant

This webinar will focus on Survivorship. The date is Oct. 9, 2024, from Noon to 1:30 pm EST. Note the time zone. More below.

To register, click here:

You're Invited to the 7th International Chronic Graft-versus-Host Disease Symposium in Vancouver, Canada

Oct. 16-17, 2024

(Registration is available in person and virtual)

We are excited to be a part of this symposium and share this info. The 7th International Chronic Graft-versus-Host Disease (cGVHD) Symposium will take place in Vancouver, Canada, at the Sheraton Vancouver Wall Centre.

This marks the first time this prestigious international event will be held in North America, after being hosted exclusively in Zagreb, Croatia since its inception in 2013.

We're proud to participate and tell you about three dedicated sessions for patients, families, and caregivers living with cGVHD:

• Patient-Reported Outcomes and Their Impact on Care: A session for both healthcare professionals and the patient community, focusing on how patient-reported outcomes shape care strategies.
• GVHD Alliance Lunchtime Session: Learn about the GVHD Alliance, a collaborative effort among North American patient advocacy groups, including BMT InfoNet, nbmtLINK, and LLS. For more information, visit www.gvhdalliance.org.
• “GVHD Throughout the Ages”: This session features presentations from patients and caregivers across different age groups (pediatric, adolescent and young adult, and adult) along with a panel of healthcare professionals to discuss effective strategies and solutions for improved care.

Additionally, join us for a Patient and Family Community Networking Session, designed to help attendees connect and build lasting relationships.

While you are welcome to attend all sessions, please note that many of the two-day program’s sessions will be highly scientific. Some content may be complex for those without a medical background.

To learn more, click here:

Get your FREE Bag It bag, thanks to support from Incyte. For a limited time, you can order a FREE GVHD bag which contains valuable resources from Bag It and nbmtLINK.

To order your free bag, click here

Please use the code GVHD24