MPNRF | Under the Microscope

May, 2019

MPNRF Under the Microscope

Examining the Link Between High-Risk Mutations and Transplant Outcomes in Myelofibrosis

“Collectively, I think all of these findings are telling us that mutations definitely have an impact in how patients do after they get a transplant, but what is clear from all of these data is that we need larger data sets to come up with more definitive conclusions,” said Raajit K. Rampal, MD, PhD.

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Have you recently been denied coverage of a medication for your MPN? We want to hear about it. Please send an email to [email protected] with your story. Include the name of the medication, what reasons were given for the denial, whether you are appealing the decision and what the impact on your life is. We'll share what we learn in a follow up post. Click the button below to share your story anonymously.

Click here to share your story anonymously

Click the video to watch Janet Woodcock, M.D., Director of the Center for Drug Evaluation and Research at FDA discuss the importance of patient registries for rare disease research, specifically, natural history registries like myMPN.

FDA Approves Jakafi (ruxolitinib) for the Treatment of Patients with Acute Graft-Versus-Host Disease

Incyte Corporation today announced that the U.S. Food and Drug Administration (FDA) has approved Jakafi (ruxolitinib) for the treatment of steroid-refractory acute GVHD in adult and pediatric patients 12 years and older. Jakafi is the first and only FDA-approved treatment for this indication.

“For the first time, patients with steroid-refractory acute GVHD, and the physicians that treat them, have an FDA-approved treatment for this serious disease,” stated Hervé Hoppenot, Chief Executive Officer, Incyte.

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full release

For those of you who are turning to Amazon for your upcoming Father's Day purchases, don't forget to do your shopping at smile.amazon.com and select MPNRF as your charity of choice! By doing this, AmazonSmile will donate a portion of your purchase price to the MPN Research Foundation and at no cost to you. Get started by clicking the link in below!

Click here to set up your AmazonSmile

Meet MPN patient Diane Hilton and read about

her 31-year journey with Interferon.

Diane Hilton was first prescribed Interferon when her elevated platelet counts were discovered in 1988. Since that time, Diane pursued a career in nursing, raised 4 children, and checked becoming a licensed pilot off her bucket list. Diane has credited Interferon with keeping her healthy and alive for those 31 years.

What would you say to someone who is thinking about donating to the INF Initiative?

"I would say just go for it... with your help, I believe more people may live. It

takes everyone to do their part. Most people these days know someone that has some type of cancer. Please help blood cancers by donating to the INF initiative.

The life you save could be your own."

Click here to read Diane's full story

Upcoming June Events

There are several patient and caregiver events coming up in the month of June! Head over to our MPN Community Calendar on MPNRF's website and check out the many educational meetings and webinars taking place!

MPN Community Calendar

MPN Research Foundation

180 N Michigan Avenue, Suite 1870 | Chicago, IL 60601

312.683.7247 | www. mpnresearchfoundation.org