Learn about Myeloproliferative Neoplasms

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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Nature Medicine: Drug Stops Reproduction of Cancer Cells in Myelofibrosis

According to a paper published in Nature Medicine, the drug MLN8237 (or Alisertib) has reduced tumor cells, blood counts and fibrosis in mouse models of myelofibrosis. Reports John Crispino, PhD, "This new paper shows that Alisertib has an anti-tumor effect in samples of myelofibrosis, similar to what we saw in megakaryocytic leukemia." 
John Crispino is also the Scientific Advisor for the MPN Research Foundation. [...]

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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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Update on Medicare Coverage Decision for Stem Cell Transplant in Myelofibrosis

The Centers for Medicare & Medicaid Services’ Coverage and Analysis Group released a proposed decision memo Thursday on modifications to the National Coverage Determination for allogeneic Stem Cell Transplant. CMS has proposed to expand coverage through Coverage with Evidence Development (CED) for allogeneic HCT to include myelofibrosis, multiple myeloma and sickle cell disease. [...]

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Silvana-ET

I am Silvana, and I live in Rotterdam, The Netherlands. I'm 52 years old and was diagnosed with E.T December 19th, 2011, about 3 weeks after I had a bone marrow biopsy. I have 2 children, a daughter and son. My other experience with a chronic condition was with asthma, which I was diagnosed with 1993/1994.  [...]

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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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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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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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Help Fix Medicare's Gap of Coverage for Myelofibrosis Patients Seeking a Stem Cell Transplant

I just submitted my first public comment ever to the Centers for Medicare and Medicaid Services (CMS), the body that governs what is covered by Medicare and Medicaid. By the time you finish reading this I hope you'll decide to follow suit.  [...]

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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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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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MF Challenge Grants for 2013 Announced

Today I got to do one of my favorite tasks: call grantees to let them know they have been awarded funds for their research. For the second consecutive year, the MPN Research Foundation and the Leukemia & Lymphoma Society have collaborated to review and award research projects proposing new ideas of how to stop or reverse fibrosis. Winners of these one year concept grants focusing on fibrosis and myelofibrosis are: [...]

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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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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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Dr. Mesa on Late-Stage Trials in Myelofibrosis

Dr. Mesa recently filmed a video for OncLive in which he describes some Phase 3 clinical trials ongoing for Myelofibrosis.  [...]

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

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