Tuesday, December 27, 2011

What we do at American Society of Hematology's Annual Meeting

MPNRF grantees Saghi Ghaffari, Wei Tong and Ross Levine 
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. 

In addition to giving out our English and Spanish brochures we also discussed grant programs for the coming years and distributed information about our cancer center visits program. As part of this initiative, our VP of Development Ann Brazeau travels to cancer centers around the country informing doctors about the latest in research developments and informing them how we can help start a patient support group and send our free brochures. 
MPNRF Director of Administration
Michelle Woehrle mans the booth

Another component of what we do at ASH's Annual Meeting is meet with our current grantees. When possible we organize a dinner so that they can meet each other and we can all hear about what's going on with their research. These are in addition to regular progress reports evaluated by our Scientific Advisory Board

Soon we will publish our Scientific Advisor John Crispino's report of important MPN updates from ASH. Sign up here to get the latest updates or check back at our website in the coming weeks.

Thursday, November 3, 2011

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 Cure, Bowling for Blood Cancer, Feel the Need Feed the Cure and now... Costumes for a Cure!?  

Our guest blogger Emily recently gathered a group of friends for a costume party / fundraiser to contribute to MPN Research Foundation. Over at her blog she'll tell you about what throwing the event meant to her, but we think it would be good to talk about what these events mean to us at MPN Research Foundation. 

We are a patient founded and patient funded organization, which means nothing happens without the help and support of patients around the world who are interested in contributing their time or money towards helping find better treatments or a cure for the myeloproliferative neoplasms. Our board consists primarily of people who have MPN or are related to someone with it, all highly motivated to find a way to help the maximum number of patients possible, ASAP.

With holiday season approaching once again and MPN research advancing, it is a better time than ever to think of what you can do. Consider making a donation or hosting an event this holiday season to benefit MPN Research Foundation. We're always happy to discuss your plans, so if you need any guidance or have any questions you can reach us at 312-683-7249.

Wednesday, October 26, 2011

How to be your own best advocate: The infamous binder article

Guest post by MPN patient Emily

In my first post here I wrote briefly about the binder that I take to every appointment. I have received several questions about it since then, and just thought I would elaborate on why I use it, and what I include in it.

First and foremost: I have NEVER been a very organized person. Just ask my parents about my bedroom or my school work as a child...yikes. After being diagnosed with ET though, and after my brief bout with apathy, I felt that my life was sort of tumbling out of control. I had to find a way to create some order to keep myself sane..ish.

Not knowing about the disease, or how to manage it, I took control the only way I could think of. I did as much research as I could and organized every single piece of information I could get my hands on. That way, any minor changes would be seen by me, nothing would get by me and I'd be an active member in my treatment team. 
Even though I was not in direct control of the things that were happening to me, I could at least monitor them and that made me feel a lot better. 

The Binder is in 6 parts. I'll go ahead and vaguely outline it a bit so you can get the general idea:

I) Questions/Answers for doc
-Just like it sounds this section includes any questions that I have for the doc at the time; either about symptoms I'm having or a new article I may have read about treatment method, clinical trial etc. Make sure you have a notebook with you though to go along with your questions. You always want to be able to write down the answers. I made the mistake of not writing them down for a while and without fail I would forget the answer to the questions by the time I wanted to refer back to them.
II) New/Recurring Symptoms
-As new symptoms occur, I write them down and keep track of what they were, when they happened and how long they lasted. I find this to be helpful, particularly when I can link the symptoms to changes in  medication or blood count. Which leads me to section 3... 

-I get a copy of every CBC I have. This helps me to get familiar with my blood counts, what my normal range is, and how the numbers fluctuate as medications change.
IV) Medical History/Appt Notes
-I have my entire medical history including surgeries, medications, my current diagnosis and and changes there may be. I also like to have my appointment notes from my onc. It takes a few days to get them once requested, but it is very useful to have. I can refer back to the notes from a particular appointment and get clarification on something that was talked about, and compare the notes to previous CBCs and see the conclusions the team has drawn from the changes etc.
V) Scans/MRIs/CTs etc
-These come in handy if a doc asks "Have you had a (fill in imaging test here) recently?" You can say conclusively no or yes and what date. But honestly, I keep these because they're kinda cool. I especially love the x-rays of my hips from when I had orthopedic surgeries...you can clearly see the outline of the screws in my hip...it's pretty awesome...Yes, I am a huge nerd. Thanks for noticing :)
VI) Articles/Research
-These are good to have because as I have stressed before YOU are your best health care advocate. Doing research and learning what could be out there is not pushy, it is not needy. On the contrary, it is necessary, in my opinion.

This binder comes with me to the oncologist, to the GP, heck...if I ever think it's useful I'll probably take it to the dentist with me. I have thought about carrying my binder with me at all times. For convenience sake though, I did away with that idea and made a digital version of my binder. I keep it on a portable USB drive that I have in my wallet at all times. I update it frequently to make sure that it is current. Having a chronic illness, you never know what may happen, so it is best to be as prepared as possible.

I will say it once again: You are your best advocate. If you do not stay on top of your health care, then who will?

Saturday, September 17, 2011

You don't LOOK sick!

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

MPNs are "Invisible Illnesses". There really are not many outward signs that show we’re sick, but boy do we feel it. I don’t know about the rest of you, but , no matter how I look, sometimes I feel like I’ve been run over by a truck. 

However well-intended the phrase may be, saying “but you don’t LOOK sick…” to a sick person is pretty insulting. The implication being that we are faking it or that it’s not real. We don’t look sick? Well…what does sick look like, pray tell? Should we all be emaciated, bruised, or limping? What does it take to be acceptably sick? This may surprise some...but not all sick people look alike. Shocking, I'm sure. (insert snarky eye roll here).

We all have good days and bad, but for the Invisibly Ill, the bad days often outnumber the good. Most of us, though are obliged to put on the happy face and get on with things. If we didn’t, we wouldn’t be able get much done. I often feel like I am two completely different people; the one on the outside, who looks just fine, and deceives everyone around her; and the one on the inside who is exhausted, and battered and miserable. 

I learned to put on the happy face real quick when I got my first “Grown-Up Job”. I started at my office as the receptionist, so putting on the perky, bubbly personality, however fake it may have been, became a part of my daily life. Fatigued, sick, headache? Didn’t matter. That smile was plastered on. Inside I might have been cursing the phone for ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick…you would not know. There are days though when I just can’t fake it anymore, my fatigue catches up with me and knocks me out. On those days, I tend to hear that dreaded “but you don’t LOOK sick...”. Also on those days my sarcastic side will often think(or sometimes say, depending on the audience) "And you don't LOOK like a jerk..but I guess appearances can be deceiving, can't they?"

Believe me, I am neither wanting nor expecting sympathy.  Understanding would be wonderful though. Yes, it's true that we don't fit the picture in most people's heads of what sick should look like, but trust me while these illnesses may be invisible, we and our pain certainly are not. 

Please, think twice before telling us we don't fit your image.

Wednesday, September 14, 2011

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 researcher, real patient stories, expanded disease information, MPN research news archives and more.

We hope you enjoy the fruits of our labor, and we want to know what you think. Please be sure and drop us a line with feedback at mwoehrle@mpnresearchfoundation.org.  And if you haven't already done so, remember to sign up for our upcoming Fall 2011 newsletter. 

Wednesday, August 31, 2011

Be a partner in your health team

Guest post by Emily, ET 

Emily in 2011
At 18 I was a typical college freshman. Happily and healthily being the semi-irresponsible person I was supposed to be at that stage of my life. That spring I started getting lots of headaches and had HUGE bruises on my forearms. I went to my GP and after a brief side-trip to misdiagnosis-land, it was determined that I should see a specialist. I started seeing a hem/onc, and after a quick and painful bone marrow biopsy, and not so quick, almost as painful waiting, found out that I have essential thrombocythemia (ET). Big long words with no meaning. A quick trip to Google later and I was slightly more well-informed. Being 18, I didn’t take it terribly seriously, and didn’t want to feel labeled. So, what’s the logical thing to do? Ignore it and it'll go away. Kind of like “if I can’t see you, you can’t see me”, the typical three-year-old’s hide-and-seek theory, applied to medicine. Unfortunately that doesn't actually work.

I was first prescribed Anagrelide, and was on anywhere from 0.5mg/day to 7.0mg/day. I had lots of side effects with this it, headaches, heart palpitations, dizziness etc. If it could be found on the label as a possible side effect, I probably had it. I am lucky to be in the 50% that cannot tolerate it. So in addition to not wanting to recognize this issue in the first place, I was able to almost get away with not taking my meds by emphasizing how bad the side effects were.

After a while of not taking my meds on time, or sometimes even not at all, and having LOTS of complications, I came to realize that I was being pretty silly. Shortly there-after I got a new doctor who was more familiar with ET patients, got a new prescription and started taking my meds…almost regularly even!

I still had complications from time to time, resulting in pheresis, and dosage increases in my meds, but instead of being apathetic, and letting “whatever happens happen”, I became an active patient. Managing my health is not only the responsibility of my doctors, it is mine as well, and I became to accept that I could be a partner in my own health, rather than a passive victim of my condition.

I am now extremely involved in my treatment to the point where my doctors probably dread seeing me and my now-infamous binder. The binder goes with me to all of my doctor’s appointments - Hem/Onc, GP - doesn’t matter. The binder goes with. It has every piece of my medical info I can get my hands on plus questions I may have, plus articles I’ve run across that I want my doctor to look at, etc. I have accepted that this is part of my life. I have setbacks occasionally, but mostly I just roll with it.

When this started I was so afraid that I'd be labeled as "the sick girl", that I made myself sicker. It took me a while to figure it out...but I finally realized that these diseases are only a small part of us. They do not define us as people. What defines us is how we handle the setbacks that may come along with it. 

Thursday, June 9, 2011

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.

Whether or not these other groups are righteous in their funding of non-research programs (like providing teddy bears to sick pediatric cancer patients) is something their board must address.  Perhaps because our board of directors is comprised almost entirely of MPN patients and their family members do we feel it is imperative to keep our resources flowing towards the activities that  offer the best shot at curing MPN patients if not alleviating their symptoms and extending their lives.  

Recently we completed our annual report for 2010, where we discovered we spend 92% of our program service dollars on research, with a remaining 8% on education and advocacy.  Our emphasis on research, even over other worthy pursuits like education, allows a patient to fund their own potential cure.  We tell patients that, with us, you can affect your own outcome by making an investment in MPN research.  It's a radically proactive stance, but it's the nothing less than what MPN patients (on the board and off) demand.  

Tuesday, May 10, 2011

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).     

New York MPN Patient Symposium
The Cancer Research and Treatment Fund has once again invited the MPN Research Foundation to co-host a patient education symposium in New York, this one on November 2, 2011. Details will be on our website as we complete speaker selection, location and additional logistics.  Click here for the Save-The-Date.  

Cancer Center Visits 
The MPN Research Foundation has begun to make personal visits to cancer centers across the country.  These visits are specifically geared to engage the hematologists who see MPN patients. We want clinicians to know who we are, what we do and how we can assist their patients by connecting them to patient support groups, materials, providing educational symposia and general support. A clinician/ researcher usually joins us to bring physicians up to date on diagnosis, current treatment protocols and updates on clinical trials. 

Want to get involved?  If you think your cancer center or hematology group would be interested in this short two hour presentation, please contact Ann Brazeau at abrazeau@mpnresearchfoundation.org.

Friday, April 15, 2011

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.   

Why the change? Because in 2008 the World Health Organization (WHO) developed a new classification system for the Myeloproliferative Disorders (MPDs), and in the process changed the official designation to Myeloproliferative Neoplasms (MPNs).   They also added a handful of new blood diseases to the category, such as chronic neutrophilic leukemia, chronic eosinophilic leukemia, hypereosinophilic syndrome and the not-very helpful "MPNs, unclassifiable."

However, the three diseases that have always been our concern - polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF) - are still considered the "classic" Philadelphia chromosome-negative [Ph(1)] myeloproliferative neoplasms.  Our focus will remain on funding research to find a cure for these three diseases.

The word "neoplasm" actually defines our diseases far more precisely than "disorder" did. Neoplasia (Greek for "new growth") means the abnormal proliferation of cells - in our case, one or more lines of blood cells.  Many kinds of neoplasia result in lumps or tumors, either benign or malignant.  They are called neoplasms, too, and are a good deal more common than our blood cell neoplasms; so friends may think you're using the term "neoplasm" incorrectly.  You won't be.

Though we've changed our name we're still pursuing the same research goals as always.  With your continued support we are able to be sure that the understanding of MPNs is constantly improving, leading to steps forward in science, therapies, and of course, nomenclature.  This name change puts us in line with the latest thinking of authorities like WHO and we think it's a change that will be beneficial to the MPN community's understanding of their condition.  Please take a moment to read about our new 2011 research grants, and consider giving the fact that this research is funded primarily by MPN patients around the world.  They will be responsible for the next advancement in treatments. 

Wednesday, February 23, 2011

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.

We also happen to be impacting the lives of those in the research community, including a group we've focused on through our last two grant cycles: new investigators.  

This is a group we define as being new to the field of MPN or simply new to independent research and desiring to work in MPN.  Although we've funded up and coming researchers in the past, since 2008 it has been a goal of ours to target this group for funding along with our grants to more experienced investigators.  Both types of investigators are working towards the goal of finding the causes of and potential cures for the myeloproliferative neoplasms.  

On that note we'd like to introduce some of our newest grant recipients:

Wei Tong, PhD, Children's Hospital of Pennsylvania

Dr. Tong will be working on a project titled "K63 Ubiquitination in JAK2 Signaling and Myeloproliferative Neoplasms".  The bottom line is that Dr. Tong is trying to determine how LNK affects JAK2 signaling.  JAK2 is basically an on-off switch whose malfunction is present in many MPNs.  LNK normally regulates the JAK2 switch to prevent myeloproliferation; mutated versions fail to turn off the signaling.  

Toshiaki Kawakami, MD PhD, La Jolla Institute for Allergy and Immunology.

Dr. Kawakami's project is titled "SPS Complex in MPD".  In this project he will be studying a series of genes whose absence in mice is known to cause tumors and myeloproliferative neoplasms.  His hypothesis is that the same thing happens in humans, and if correct, the discovery could lead directly to new therapeutic targets for MPN drug development.

Saghi Ghaffari, MD PhD, Mt. Sinai School of Medicine

Dr. Ghaffari's project is titled "Understanding Molecular Mechanisms of Regulation of Myeloproliferative Disorders in Mouse and Human".  With this project Dr. Ghaffari will be investigating a different signaling mechanism altogether whose failure may be responsible for myeloproliferation.  This is important because the JAK2 mutation is not present in all MPN patients; there must be at least one other mutation to account for those cases.

We will monitor their progress and report back as their work develops.  As one of the only organizations serving the needs of patients with myeloproliferative neoplasms we are committed to not only funding such projects but also to providing information and support for MPN patients.    

Monday, January 3, 2011

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.  

Pepsi's Challenge Refresh Program has selected NORD to be in the running to receive $50,000 to improve and expand their registry of diseases. NORD would like to make their existing registry more user friendly, including adopting language that is more comprehensible to patients and the lay public.  

We are pleased to say that helping NORD (and, by extension, people living with a rare disorder such as MPD / MPN) is free and easy.  Just register here and vote for NORD's project.  The 10 organizations who receive the most votes will each win $50,000. For the 1 in 10 people in the United States who have a rare disease (and more internationally), having access to information on their disease is vital in managing their treatment and symptoms. 

We at MPD Foundation believe it is important to partner with organizations who are working in the area of rare diseases.  There is potential for our struggles and strengths to overlap and help each of us understand our respective struggle.  Our relationship with NORD is just one of many we have established in the orphan and rare disease community.