Joyce Niblack may have been the truest friend the MPD community will ever have. She was always there, to answer questions, reassure patients and share information on the latest developments in the field.
She worked with the late Dr. Harriet Gilbert to publish the first MPD patient newsletter.
She founded and managed the MPD-Net online support group, which under her guidance grew to have more than 2500 subscribers worldwide.
She founded the CMPD Education Foundation and was a founding member of the board of directors of the MPD Foundation.
She was a strong advocate of the notion that patients should take an active role in managing their diseases, and she organized the biennial Mayo/CMPD Education Patient Conference around the then-revolutionary concept that doctors and patients would all gain from talking together and sharing both scientific developments and personal experiences. The fifth conference, which Joyce organized down to the last detail even as she was dealing with increasingly serious medical problems, will be held this February 28 through March 1 in Scottsdale, Arizona.
Joyce even helped advance scientific knowledge in the field. More than a thousand MPD-Net subscribers sent blood samples to Dr. Gary Gilliland at Harvard, at her request. He used the results to shape one of the first publications about the importance of the JAK-2 genetic mutation in the myeloproliferative disorders. And she collected quality of life data from MPD-Net subscribers and was a co-author of two journal articles on the subject.
Joyce Niblack, so loved by so many, passed away this past Valentine’s day. We extend our sympathies to her husband Bob, and to her family.