MPNRF Blog

Empowering the MPN patient, and the Good Stem Cells into the Future

Dr. Angela Fleischman has been researching the familial prevalence of MPNs for nearly ten years. A faculty member at the University of California Irvine, she hopes to one day be able to study patients remotely to expand her research outside of the Southern California area and broaden the scope of the MPN patient family registry. Dr. Fleischman earned her Ph.D. and MD from Stanford University and knew early on her goals of the research. [...]

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What happens in Prague really shouldn't stay in Prague

Over 50 MPN patient advocate groups from around the globe congregated in Prague, Czech Republic, this August. The purpose was to share best practices, learn about what is going on in MPN research and also what issues patients in their countries are grappling with. [...]

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Are PV, ET and MF passed down in families?

Written by Robyn Scherber, MD [...]

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The Importance of Partnerships in the MPN Community

They bring people together in pursuit of a common cause and put many minds to work on a problem, increasing the likelihood that a solution is found. That’s why we are getting into the business of creating partnerships. The MPN Research Foundation believes that researchers in the field should be collaborating across institutions to solve some of our hardest questions. We are eager to bridge the divide and offer a framework for these kinds of relationships to develop and thrive. [...]

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Blood article discusses epigenetic changes in Myelofibrosis following discontinuation of ruxolitinib

The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional mutations which took place in 35% of patients on Ruxolitinib, most notable the ASXL1 gene, which was found in 64% of patients who acquired new mutations. 
 
We asked one of the authors - Dr. Serge Verstovsek - about what patients should take away from this article. He responded "While ruxolitinib in great majority of patients controls symptoms and signs of myelofibrosis very well, and with that may prolong life expectancy, it does not prevent a change in diseased cells, which can acquire new mutations or other characteristics that will make them resistant to ruxolitinib. This leads to a loss of a control and poor overall outcome. Therefore, one would like to encourage patient to consider a bone marrow transplant while doing well on ruxolitinib, to be potentially cured." 
 
This provides further motivation for studies that explore why people with ET or PV progress to MF and/or have a worsened prognosis, and how to stop that progression. It also supports the need for more therapy options for patients who can't take Ruxolitinib, or who must stop taking it. We encourage you to share this with your doctors, nurses and care team. 
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Impact Biomedicines goes out on a high note

Impact Biomedicines recently made headlines in the MPN world and beyond with their push of Fedratinib, which was sold to Celgene who will further develop it for Myelofibrosis. This week they found another way to give back by making their company goodbye party into a fundraiser for MPN Research Foundation and MPN Advocacy and Education, International. Impact Biomedicines leaders Charlie McDermott (President and CBO), John Hood (CEO and one of the inventors of the drug) and Gerrica Clark (Operations Manager) got together to make the event - a concert featuring the Gin Blossoms which took place Monday at iconic rock club Belly Up in San Diego - happen on barely a month's notice.  [...]

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Today is Rare Disease Day

Today is Rare Disease Day. [...]

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Finding Help Across the Horizon: What Global Collaboration Can Accomplish

Finding Help Across the Horizon: What Global Collaboration Can Accomplish [...]

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Goodbye 2017. Hello 2018.

We had a busy year pursuing many avenues, new and old, in search of more effective treatments and a cure for MPN patients. 
 
In 2017 we continued to grow the network of MPN advocates helping patients globally; sent information kits about PV, ET and MF to hundreds of newly diagnosed MPN patients and their caregivers; launched myMPN, the first registry created by a patient advocacy organization for MPN where patients control what researchers have access to their data; awarded 5 new research grantsset up the MPN Interferon Initiative; held the first meeting for the Progression Marker Projectmet with the FDAto learn about how to become better advocates; updated our clinical trials page; attended patient education events online and in person hosted by our fellow MPN advocatesheard from the MPN experts at ASH and held a Roundtable of MPN researchers to find out what unmet need we should focus on in 2018. 
 
While our community has cheered big breakthroughs when other diseases found their miracle cures, we have waited. There were no new drugs approved for MPN in 2017. No blockbuster scientific breakthroughs. It can be disheartening or discouraging to wonder when our big break will come. 
 
But we do have hope and optimism because we are investing in MPN research today that will pay off for people living with these rare cancers.

Every day, our staff, board and scientific advisers wake up with a sense of purpose and commitment to make life better for people living with PV, ET and MF. This is the motivation and goal that keeps us going. Here's to what we hope will be a positive new year for people living with and caring for MPN patients everywhere. 
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