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. [...]


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. 

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.  [...]


Today is Rare Disease Day

Today is Rare Disease Day. [...]


Finding Help Across the Horizon: What Global Collaboration Can Accomplish

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


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. 

How we can help move MPN research forward together

I was hired by the MPN Research Foundation in May 2016 to spearhead the development and launch of the first ever patient driven registry.  At the time I was working for another disease foundation managing research projects to find a treatment or cure for an ultra orphan disease that affects less than 100 people in the US.  While not life threatening, the disease (Usher Syndrome type 3) causes progressive loss of hearing and vision over many years until the patients rely on cochlear implants or tactile sign language to communicate and are completely blind.  In working with the patients afflicted by Usher syndrome, I began to understand the disconnect between the patient experience and the scientific process being undertaken in the labs and universities around the world.  In cases where a disease progresses slowly or where there may be triggering events that cause progression, are there ways that patients can help the scientific process along? [...]


What does an

In a few days, the  month will change to September, which is recognized nationally as Blood Cancer Awareness Month. While you are already aware of MPNs, or myeloproliferative neoplasms, there are many factors indirectly but adversely affecting people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. A few we hear from patients frequently are: [...]


Health care law continues to evolve

As the American health care law continues to evolve, the MPNRF is staying on top of how it is changing, and how people living with an MPN might be affected. This article from Kaiser Health News provided what we thought was a good assessment of where we are now, and what may happen: [...]

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