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 "awareness" campaign have to do with PV, ET or MF?

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: [...]


New rules on data sharing: how will they impact MPN trials?

ASH Clinical News ran an article last month about new rules from the NIH that dictated that outcomes from clinical trials operating with NIH funding must be shared within 12 months of the close of the trial. This is significant for clinicians who run trials, companies who provide drugs for trials, institutions that host trials and most importantly, patients who put their health and lives on the line when they participate.

MPNRF has long felt that whatever the outcome of a trial, the community is served by finding out what happened. We've seen trials come and go, always with reports of some patients experiencing benefit. While our focus is funding research that can effect patients' lives and change their prognosis, we also want to advocate for the release of information that could provide clues to what drugs work, in what patients, and why, in the event that another researcher or company may pick up the ball, even for failed trials.  [...]


Thalidomide and Me by Landon Y. Jones

Note: Below is a first person account by an MPN patient of his experience with a clinical trial. This is not meant as an endorsement of the drug, company or institution involved. If you would like to share your story of being on a clinical trial please send an email to [...]

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