When I was first diagnosed with Essential Thrombocythemia in my mid-thirties, I read through the many sources of conflicting information found online. It left me asking many questions such as: Was this a big deal? Am I over-reacting? Am I under-reacting? Do I tell anyone? Is this because I was raised beside a chemical plant? Because I previously smoked? Because I microwaved my food in plastic? These types of unproductive thoughts flooded my mind and consumed entirely too much of my time. I turned to online forums filled with people who were equally confused, scared and frustrated and also, unfortunately, sharing misinformation. This was gasoline on an existing depression fire that I already had burning. I knew I had to change my focus quickly or my biggest fears would materialize. I would be sickly because honestly, in life, we get what we focus on the most. [...]
The patient registry, or natural history database, coming in 2016, will allow patients to report data spanning symptoms, demographics, treatments, and more. MPNRF is seeking to add to our small but mighty team by recruiting for a newly created role: the Registry Manager. [...]
Even though MPN patients who have a rare disease many may have never heard of "Rare Disease Day" and know next to nothing about the impact rare disorders have on society. Rare diseases play a larger role in public health than most people realize and deserve consideration from the medical community, policy makers, and the general public. [...]
There has been, from time to time, a question about whether myeloproliferative neoplasms are cancers. Let’s be clear, they are. But don’t take our word for it. [...]
For the past several months we've kept you informed and taking action on Medicare's pending decision of whether to provide coverage for people with myelofibrosis seeking a stem cell transplant. Currently there is no official ruling from Medicare on whether this treatment is covered, leaving many patients to risk paying out of pocket (running potentially several hundred thousand dollars) or scrambling to find alternative ways to cover it. [...]
According to a paper published in Nature Medicine, the drug MLN8237 (or Alisertib) has reduced tumor cells, blood counts and fibrosis in mouse models of myelofibrosis. Reports John Crispino, PhD, "This new paper shows that Alisertib has an anti-tumor effect in samples of myelofibrosis, similar to what we saw in megakaryocytic leukemia."
John Crispino is also the Scientific Advisor for the MPN Research Foundation. [...]
On October 29, the Centers for Medicare and Medicaid Services (CMS) issued a proposed rule allowing Medicare coverage for stem cell transplants in approved clinical trials for Myelofibrosis (MF) patients. Unfortunately, some of the requirements in the proposed rule would actually decrease access to stem cell transplants. View the proposed decision memo by CMS. [...]
Do you want to double your dollars? A $25,000 Matching Gift Fund has been setup by a group of generous donors. That means that a gift of $100 made on Giving Tuesday, December 1st will become $200 to help find better treatments and a cure for MPNs. Give to the MPN Research Foundation on Giving Tuesday, December1st. [...]
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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..