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Patient & Family Conference Wrap-up | Thanks to Sponsors | Winners |Our Study was Published! | New Treatments | Webinars for August

Did you join us for the National Patient & Family Conference?  Or did you miss a session?

You can rewatch or catch up on any session you missed by using the link in your confirmation email.

If you didn't register, you can watch on-demand by registering here:  https://onlinexperiences.com/Launch/Event.htm?ShowKey=97149

Now Published!

This AAMDSIF-conducted study analyzes the shared decision-making between transfusion-dependent MDS patients and their physicians about the benefits, risks, and alternatives to reduce the need for blood transfusions.

You can read the entire study  HERE.

August Webinars for You

Have you heard about the latest drug approvals from the FDA? We prepared fact sheets to answer your questions!  Click HERE, then choose these titles: 

REBLOZYL - Luspatercept Fact Sheet July 2020, or

INQOVI - ASTX727 Fact Sheet July 2020

Meet Barry Parnas. His journey with MDS has been filled with ups and downs, but he remains hopeful and thankful for his support system and the care he has received.  Thanks to the gifts of supporters like you and your family, MDS patients like Barry have been able to access programs and networks to support their care and increase their quality of life.

Barry had just started a new RN nursing career, when he was diagnosed with MDS after a routine physical.  As a scientist, he started doing his research and discovered AAMDSIF. 

He attended an AAMDSIF conference in Minneapolis, where he met his future physician.   Barry liked the way she listened, her straightforward answers, and her experience with balancing treatment and quality of life.

Barry was cared for by the hematologist-oncologist he had been seeing since his move to Minnesota when he needed blood transfusions and Vidaza treatment.  This continuity of care is so important for quality medical care and for patients' peace of mind.  

“The last 9 years of my life have probably been the happiest and fulfilling of my life.   At first, I thought the end of the world had come when I received my diagnosis in 2010.  It paralyzed me to a point.  Maybe I was able to experiment with my life because I felt that I didn't have much to lose?”  

“A severe diagnosis, severe illness, and complex treatment upended my life.   I suggest that people contact other MDS patients and BMT patients through the Foundation to find a community and the resources available. Healthcare is never only about medicine.”

Please consider a gift in honor of patients or your loved ones!