San Diego Symposium Brings the Experts to the Patients

Guest post by Ann Brazeau

Keynote speaker Dr. Catriona Jamieson addresses the crowd

The MPD Foundation hosted a patient educational symposium in San Diego on October 25^th at the UCSD Moores Cancer Center in La Jolla.  Each speaker commended the attendees for taking an active role in learning about their rare blood cancer and for supporting research and awareness efforts to ensure better treatments and care.  They agreed that patients are key advocates for changing the course of their future. 

There was a brief discussion about why the World Health Organization changed MPD (Myeloproliferative disorders) to MPN (Myeloproleferative neoplasms) and why it was important.  This change clearly specifies and classifies the disease as a blood cancer.   Data is collected and gathered appropriately when a patient is diagnosed.  This change will also ensure payment from insurers who were skeptical about the classification of the disease as a cancer.

Our keynote speaker, Dr. Catriona Jamieson, MD, PhD, is an Assistant Professor in the Medicine Hematologic Malignancies Program and Director of Stem Cell Research at UCSD. Dr. Jamieson found that a specific mutation in the JAK2 signaling molecule occurs at the stem cell level in polycythemia and changes cell fate decisions in primitive hematopoietic cells. She discussed the possibility of using combination therapies for MPN patients since one drug may not manage all the symptoms.  Dr. Jamieson has earned great respect in the field and is a committed clinician who sees numerous MPN patients at the center.

Drs. John Crispino and Ross Levine speak to patients

After the presentations patients formed groups specific to their MPN.  A clinician/researcher joined each group and answered questions from individuals.  Patients were able to share their stories and get feedback from the experts and fellow patients.

The MPD Foundation will continue to advance research and bring updates on MPD research to patients.  These sessions are held in order to empower patients and give them the tools to successfully manage their disease.  By assisting primary care physicians, hematologists/oncologists and pathologists in hearing cutting edge information, we better equip them in diagnosing and treating patients, advancing treatment options in their own way.

We extend a special thanks to our sponsors, Incyte Corporation, Sanofi-Aventis and Cytopia/YM Biosciences.

Click here to view a specific speaker or the entire presentation via web cast. 

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.

In addition to new space we are also looking forward to making decisions regarding the new grant proposals we received with 2010's request for proposals.  Between our New Investigator and Established Investigator programs we have received over 40 proposals.  A cursory review suggests some exciting opportunities to accelerate research into the myeloproliferative disorders: polycythemia vera, essential thrombocythemia and myelofibrosis.  In November the MPD Foundation's Scientific Advisory Board will work with an additional team of reviewers to score these proposals on the basis of scientific merit, relevance to MPDs, and potential for collaboration.  We make our funding decisions and announcements in February 2011. 

The MPD Foundation has always been focused on fostering collaboration among researchers as well as between the research community, industry and clinicians.  We made a specific plea in the 2010 Challenge Grant request for proposals (RFP) for proposals that highlighted collaboration.  It is our belief that research occurring in a community instead of a silo will facilitate faster breakthroughs that will help patients.  We now know that we are not alone in our belief as more patient-driven and research focused non-profits benefit from this model of operation.  It is our goal to make this new way of doing business work for MPD patients now. 

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.

The use of new technology like Twitter, Facebook and listservs has created a network previously unheard of in the health community.  Patients (and their families) now have access to a wealth of information and anecdotal first hand accounts of patient experiences with doctors, treatments and tips for living day to day with a chronic illness.  If there is a gap between the clinical advice of a physician and the need of a patient to hear directly from someone who has experienced an MPD, social media and online networks can bridge the gap for some patients. 

We've long linked to MPD-focused forums at www.mpdfoundation.org, including MPDChat, MPDNet and MPDSupport.  All offer a means to discuss and learn from other patients and occasionally doctors.  In addition we've branched out to other social media outlets such as Facebook where you can keep up with MPD news and interface with other patients.  It seems strange to say, but if you are someone with access to technology, it's never been a better time to have an MPD.

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.

The MPD Research Alliance was our collaborative program aimed at accelerating development of new treatments following the 2005 discovery of the JAK2 mutation associated with MPDs. In 2008 a category of grant was added that recognized the need for funding of researchers new to MPDs. We are proud that the New Investigator grant program has been enormously successful.

In 2011 the MPD Foundation will award a new set of grants through our 2010 Challenge Grant program. The goal is to focus on both basic and translational research. This grant program is following up on the new and intriguing discoveries upon which we hope new treatments can be discovered.

This new grant program is consistent with our role as a patient-driven organization.  Our intention is to explore all options that could lead to discoveries that benefit patients with myelofibrosis, polycythemia vera and essential thrombocythemia.  In that sense we are ourselves constantly challenging the idea that a motivated group of individuals can't make a difference. We can't wait to see how the new group of MPD researchers will challenge themselves with these new grant proposals.