MPN Research Foundation Advocacy

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? [...]

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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: [...]

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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: http://khn.org/news/senate-health-bill-would-revamp-medicaid-alter-aca-guarantees-cut-premium-support/ [...]

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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.  [...]

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February 29th is Rare Disease Day: 4 Reasons You Should Care

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. [...]

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MPN Community Joined by Legislators in Speaking up on Medicare's Plan for Myelofibrosis

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.  [...]

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Take Action Now-Medicare is About to Set Standards for Myelofibrosis Related Stem Cell Transplants

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. [...]

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Double Your MPN Donation

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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Notes From CR&T MPN Symposium

There were many interesting sections from today's meeting. Bill Crowley from the MPN Research Foundation was on the ground at the event and shared some highlights: [...]

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How to Help a Sick Friend

What can I do to help?" is probably the most common thing we say to a friend who is ill or in need. But despite our best intentions, this may not be the best way to lend a helping hand. When a person is diagnosed with an MPN blood cancer, patients often feel too overwhelmed or too proud to know how to respond. Now, here's some ways for you to support a sick friend. [...]

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Blood Cancer Awareness Month on Social Media

Tomorrow is the first day of September and this means it's the first day of Blood Cancer Awareness Month (BCAM).
All through September, share your stories & advice -- help us in the fight against blood cancer. We'll be using BCAM throughout September and we encourage you to do the same! [...]

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MPN Clinical Trial Highlights for Summer 2015

If you have MF, PV or ET but don’t need medication now, you may think that clinical trials don’t matter to you. But that could change, at which point you may want to review your options. Thankfully, over the past years the interest in developing treatments for people living with these rare, chronic blood cancers has exploded. Here are some clinical trials we’re keeping our eye on: [...]

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MPNs Made News at ASCO This Year

The American Society of Clinical Oncology has its big meeting each year in Chicago in early June. In the past solid tumor cancers have received the most attention, saving blood cancer announcements for the American Society of Hematology meeting where the focus is more narrow. This year, however, was different, with big news coming from Baxter/CTIBiopharma on their Pacritinib data. Dr. Ruben Mesa presented at a press conference on progress for this drug, which is intended for people with myelofibrosis who have low platelet counts. [...]

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Trusting MPNRF with your MPN Donation

You may have heard that earlier this week the Federal Trade Commission filed a lawsuit against four cancer groups for defrauding donors. The four organizations collected $187 million between 2008 and 2012. Founder James Reynolds, Sr. and his friends and family members operated all the “sham” organizations. Less than 2 cents of every dollar donated went to aid for cancer patients.  [...]

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Health Activist and Blogger Takes on a Month Long Writing Challenge With a Focus on ET

During the month of April, blogger Lina will be participating in WEGO Health’s #hawmc. The Health Activist Writer’s Month Challenge will have her writing every day during the month of April. Themes will be based on suggestions from WEGO Health. [...]

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2015 MPN Challenge Grant Program

The 2015 MPN Challenge is a grant program supported jointly by the MPN Research Foundation and the Leukemia & Lymphoma Society. This grant program represents an important partnership between MPNRF and LLS, who share a mission to advance the scientific understanding of MPNs and bring new treatments and the hope for a cure to patients with these rare diseases. [...]

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Research Fuels Progress Against Cancer

Research continues to be our best defense against cancer. It improves survival and quality of life for millions of people by spurring the development of new and better ways to prevent, detect, diagnose, treat, and, increasingly, cure some of the more than 200 diseases we call cancer. [...]

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FDA Issues Verbal Hold for Geron's Imetelstat Application

Geron has been given verbal notification from the U.S. Food and Drug Administration (FDA) that its application for imetelstat has been placed on full clinical hold, affecting all ongoing company-sponsored clinical trials. A full clinical hold is an order that the FDA issues to a trial sponsor to suspend an ongoing clinical trial or delay a proposed trial. [...]

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Crafting the MPN Environment

The World Orphan Drug Congress recently put out an independent study of the most researched rare diseases. We were shocked to see that the MPNs (MPDs on the list) ranked No. 10 of 25.  [...]

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This September We're Putting Patients in the Driver's Seat

Last September, the U.S. House of representatives declared that September is Blood Cancer Awareness Month. In 2012 our focus was to help educate patients about the diseases and the resources available. [...]

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The Power of Patients (and an Increase in the Number of People With PV, ET, and MF)

Recently we shared the new prevalence data which put the number of people in the U.S. with PV, ET, and MF at nearly 300,000. That's a lot more people with MPN than we thought we were dealing with. [...]

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Gearing up for New Round of MF Challenge Grants

The applications for the second found of MF Challenge funding will be reviewed on Friday, May 31st in Chicago. In addition to members of the Foundation's Scientific Advisory Board, thought leaders from fibrosis will be joining the review panel as the proposals are judged. In addition to scientific merit, the applications will be evaluated based on innovation and likelihood of clinical translation. The proposals will be scored on an NIH scale. Following the meeting, the Leukemia & Lymphoma Society and MPN Research Foundation will jointly decide which projects can be funded during this cycle.  [...]

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Chicago MPN Roundtable Publishes First Article

We've mentioned before about our low-cost, high-quality project titled the MPN Chicago Roundtable. Basically, it is a group of clinicians and researchers representing some of the great Chicagoland hospitals who gather around the MPN Research Foundation conference table to discuss what they're working on individually and what they can do jointly to accelerate and improve treatment options for people living with PV, ET, and MF.  [...]

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MF Challenge Proposals Due Today!

Today our small staff is buzzing about the MF Challenge proposals coming through our email. This is the second wave of our Myelofibrosis Challenge grant program, a joint effort with the Leukemia & Lymphoma Society.  [...]

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News From Mt. Sinai on Their Panobinostat Trial for MF

Drs. Ron Hoffman and John Mascerenhas of Mt. Sinai School of Medicine in New York have reported positive outcomes from their Phase I trial of panobinostat in myelofibrosis patients. Their article published in the British Journal of Haematology states that significant improvement occurred for patients on low dosages of Panobinostat. [...]

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April Patient Events

Our partner on the MF Challenge, the Leukemia & Lymphoma Society, is hosting a few events in April aimed at educating the people living with blood cancer:  [...]

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Playing Catch-Up

It's the beginning of March 2013 and judging from our last post date this space has been silent for too long. It has nothing to do with the level of activity going on in the world of research for PV, ET and MF, though. On the contrary, 2012 was a very busy year.   [...]

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Update on the MF Challenge

On June 1st twelve experts on myelofibrosis, myeloproliferative neoplasms and fibrosis gathered around a table in a classroom at Northwestern University in Chicago. They were there to debate the merits of proposals received by the MPN Research Foundation and the Leukemia & Lymphoma Society for their MF Challenge initiative. The spirited discussion - lasting around 6 hours - ended with the proposals scored and ranked.  [...]

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February Already?!

For us at MPN Research Foundation, our year begins at December 1st with our new fiscal year. Which means that, it being February, we are 1/4 of the way through 2012 already. Even without the jump start on 2012, there is enough going on to keep us busy.  [...]

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What We Do at American Society of Hematology's Annual Meeting

For the past several years MPN Research Foundation has traveled to ASH's Annual Meeting to hear the latest news in blood from academia and industry. Since 2008 we have also participated by having our own booth in the non-profit section of the conference where we join groups like LLS and MMRF in talking to clinicians and researchers about what we are doing and what they are doing.  [...]

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Creative Ways to Make a Difference

The world of MPN has the strange ability to bring diverse groups of people together for the common goal of understanding their polycythemia vera, essential thrombocythemia or myelofibrosis better and maybe - just maybe - figuring out how they might be able to contribute to the search for more and better treatments for MPN. MPN Research Foundation has been the beneficiary of get togethers such as Chords for a CureBowling for Blood CancerFeel the Need Feed the Cure and now... Costumes for a Cure!?   [...]

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You Don't LOOK Sick!

By guest blogger Emily, who this week is blogging about Invisible Illness Week. [...]

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MPN Research Foundation Launches New Website

This summer MPN Research Foundation has worked with our Web Committee and a professional web design and marketing team to create an updated website for the MPN Community. Our goal was to offer more access to information on the MPN world such as a Q & A with an MPN researcherreal patient stories, expanded disease information, MPN research news archives and more. [...]

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How We Do Cancer Charity

Time magazine, in it's Cancer special, published an article on how cancer research non-profits are sometimes light on the research component of their mission.  Even when it's part of their name, some organizations spend less than 50% - or even 10% on funding actual research.  There is an extent to which every organization needs to diversify their programs to address the needs of their constituents, but for us at MPN Research Foundation, even as we've added education and advocacy to our programs our focus remains as always on results-driven research. [...]

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New Projects for Spring

Now that we've finished the contracting process for new grants and collected final progress reports for the grants that have closed, we have some time to focus on the education and advocacy work that also benefits MPN patients.  MPN Research Foundation is working on some new (and old) projects that increase awareness in the medical community as well as educate patients. These projects include outreach efforts to patients (through symposia) and doctors (through cancer center visits). [...]

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Changing a Name to Fit the Science

The MPD Foundation has changed its name to MPN Research Foundation.  But don't worry; you'll still be able to reach us at our current web address and email addresses, at least for the foreseeable future.    [...]

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Spotlight on New Investigators

MPD Foundation's staff and board are constantly revisiting what it means to fund research that produces results.  We look at the various ways the work we fund affects patients - from available treatments to increasing their understanding of the scientific underpinnings of their disorder.  [...]

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Vote to Help NORD's Rare Disease Registry

NORD is the National Organization for Rare Disorders.  They bring individuals and organizations together who have one important thing in common: having or working in rare disorders.  We've mentioned our participation in their medical meetings before.  Today we discovered a new opportunity to help them create a better registry of rare diseases that is accessible to patients.   [...]

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Whirlwind of Activity

Wow - is it mid-November already?!  It must be, since we finished hosting our final MPD patient symposium of the year and are starting to think about wrapping up 2010.  We've also finished our review of the grant applications we received for the RFP issued this May.  I say "we", but what I really mean is the panel of experts we bring in to assist us in evaluating proposals on their scientific merit.   [...]

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New Digs and New Grants

In June the MPD Foundation moved from a shared sublet at Willis (nee Sears) Tower to a new office on Michigan Avenue .  In addition to cheaper rent, this new space offers a better layout for Foundation staff and volunteers.  And with this new space comes a new opportunity to show it off.  As such, those in the Chicagoland area are invited to attend our House Warming on Thursday, September 30, 2010 at 5:30.  For more details or to RVSP contact Juliana at jgordon@mpdfoundation.org or 312-683-7249. [...]

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MPD Patients Connect Through Social Media

With increased access to and understanding of technology, people are finding their way online, searching out interests like cooking, basketball and even myelofibrosis.  Once assumed to be the domain of the young and frivolous, a new group has turned to the internet as a means of learning about and connecting to what is important to them.  This is especially true for patients with orphan diseases like polycythemia vera, essential thrombocythemia and myelofibrosis where the next closest patient may be hundreds of miles away. [...]

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Meeting of the Minds for MPD Researchers

MPN Researchers at the ASH meetingThe annual meeting of the American Society of Hematology takes place each year in early December.  For the past 2 years the MPD Foundation has exhibited, distributing our free patient brochure as well as speaking with hematologists who specialize in MPDs about treatments and patient numbers.  During these events we also take time to meet face to face with MPD researchers who have been awarded or applied for our grants.  This past December we had the opportunity to meet with our current Research Alliance and New Investigator grantees in New Orleans. [...]

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Challenge Grants

Requests for proposals (RFP) for MPD Foundation's 2010 Challenge Grant program left the office in May, making their way into the hands of researchers actively involved with or thinking about getting into the world of myeloproliferative disorders. MPD Foundation grant programs have gone through several incarnations that illustrate how our priorities have changed as we learn more. [...]

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MPD Patient Symposia Educate and Empower

Monday, June 28, 2010

By Ann Brazeau

The MPD Foundation believes that an educated patient is an empowered patient who can share what they know with their health care professionals to optimize treatment protocols and be able to fully participate in important decisions for their future care. To that end, in May 2010, the MPD Foundation hosted a patient education symposium in San Mateo, CA. Guest speakers included Drs. Ayalew Tefferi and Ruben Mesa from the Mayo Clinic, Dr. Jason Gotlib from Stanford, Dr. Ann Mullally from Harvard, Dr. David Leibowitz from the Palo Alto Cancer Center and author Joy Selak. For those who couldn't make it, a video of the event is available here.

Patients, family members and physicians are encouraged to attend these programs where they will hear from leading experts in the field of myeloproliferative disorders / neoplasms. Research updates, information on current clinical trials and day to day maintenance of these rare blood cancers are discussed. Open forums are provided for questions and one on one opportunities to speak with the researchers and clinicians. Attendees enjoy meeting other patients in a safe and warm environment. 

This fall, the MPD Foundation will host a symposium in San Diego, California. Dr. Catriona Jamieson will be our keynote speaker and will be joined by other leading MPD researchers and clinicians. Dr. Jamieson, MD, PhD, is Assistant Professor of Medicine/Division of Hematology-Oncology and Director for Stem Cell Research at Moores Universtiy of California San Diego Cancer Center. Dr. Jamieson studies the mutant stem cells and progenitor cells in myeloproliferative disorders / neoplasms. Her studies have run the gamut from identifying a promising treatment in the laboratory, to opening and completing the first clinical trial, to target cancer stem cells in humans.Please continue to check our Events page for updates on the next MPD symposium.

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Pricing Orphan Drugs

On a daily basis at least one of us at the MPD Foundation office is actively thinking about MPD treatments - mostly how to find more through our various projects. Whether planning a fundraiser, assisting a patient support group coordinator or looking at grant proposals, everything points back to creating an opportunity for MPD patients to live better and live longer. But recently the issue of access has taken up more space in our thoughts. [...]

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Introducing the MPN Foundation's Official Blog

The MPD Foundation is a decade old this year. We are currently waiting for proposals to arrive for the 2011 grant cycle and are looking forward to continuing to hold patient-education symposia, the first of which was held in May 2010. We continue to distribute MPD brochures to doctors and patients around the world and keep up to date with scientific discoveries pertinent to MPDs. [...]

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About the Blog

Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..

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