Polycythemia Vera Resources

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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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 info@mpnresearchfoundation.org [...]

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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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It's World Cancer Day

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. [...]

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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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Is This the Beginning of Gene-Editing Medicine?

Does the smiling face of Layla Richards mark a new era in genetic medicine that could change all our lives? [...]

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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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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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A Special Love Story

Over the last few months, one of our stars has been quietly completing a truly remarkable achievement. Rochelle Moore is about to complete her 4th century ride to raise money for MPN research. If you are not a cyclist, a century is a 100 mile bike ride that is completed in one day. It is a very grueling event. Doing four century rides in four months is a very difficult feat.
Rochelle started in June with a 103  mile ride called the Pumpkinvine Bike Ride. On July 11th Rochelle completed the RAIN Ride. That’s a 163 mile Ride Across Indiana. On September 13th, Rochelle will complete a ride called Bike Michiana, which takes place by the Michigan and Indiana state borders. She will finish her challenge with the Apple Cider Century on September 27th. [...]

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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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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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MPN Support Group Leader-Jean Diesch

Why did you become a Support Group Leader?
I became a Support Group Leader for a variety of reasons. The core reason is that I love to help people. When I was diagnosed, it was difficult finding information, whether it be medical professionals treating the disease with the latest treatments, learn what the latest research is or talking to someone that simply understood my experiences. When presented with the opportunity to start a Support Group, I had no other choice. It gave me a purpose. I retooled my skills that I developed from my work experience to focus on helping others. [...]

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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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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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Clinical Trials News for PV and ET Patients

Last week two companies reported news on their clinical trials for myeloproliferative neoplasms: [...]

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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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New MPN Quarterly Journal Launched by MPN Forum

Recently the MPN Forum launched a new quarterly journal focused on scientific medical advances. The idea behind the MPN Forum Quarterly Journal (MQJ) is to provide hematologists and scientists a professional forum to talk with other physicians and interested patients in plain English about diagnosis and treatment of myeloproliferative neoplasms. [...]

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MPN News From ASCO

The American Society of Clinical Oncologist just wrapped up its annual meeting in Chicago last week. The meeting brought together over 25,000 oncology professionals from all disciplines. Added to the fertile mix were drug companies, advocacy folks and journalists striving to understand what’s new in cancer research and treatment. [...]

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Benefit Concert for Trek for a Cure to Take Place June 15th

The Trek for a Cure is right around the corner, and to celebrate the effort and raise funds, there will be a benefit concert on June 15th in Woodland, CA featuring violinist Emily Wells. The proceeds will benefit research to find a cure for Myeloproliferative neoplasms (MPNs). Money raised will go to the MPN Research Foundation. Annette De Bow is living with the disease and has dedicated herself to raising money for this foundation. As part of her fundraising efforts, she will be hiking the Tahoe to Yosemite Trail for 3 weeks this summer! For more information see http://trekforacure.com and http://www.mpnresearchfoundation.org. [...]

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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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MPN on the Web

Lina, a young woman living with Essential Thrombocythemia, blogs about changing her medication and dealing with migraines: http://linampn.wordpress.com/2013/05/11/an-overdue-update/#more-202

MPN Forum is talking about the "silent gene" http://mpnforum.com/the-silent-gene/ [...]

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Bealers' Ride for a Cure

In 2001, we lost our Grandma to a Myeloproliferative Neoplasm (MPN), a rare form of blood cancer that had no effective form of treatment at the time. Nearly five years ago, our mom had a blood draw showing her platelet count was over 4 times higher than normal, and she has since been diagnosed with a similar form of blood cancer. [...]

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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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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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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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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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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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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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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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