MPN Patient Events
You may have heard that MPNRF, along with fellow MPN advocates, is holding an externally-led Patient Focused Drug Development meeting with the FDA this September. If you are living with PV, ET or MF we are making sure your voice counts and is heard by the FDA. One of the means of doing this is collecting feedback via a quick phone survey with two questions: [...]
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: [...]
Our support means you are never alone. [...]
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! [...]
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. [...]
The strength of a community is determined by how well it is able to take care of itself. [...]
Watch the video explaining the need for MPN research and meet patients living with PV, ET, and MF, and the researchers helping to find a cure. [...]
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. [...]
Annette DeBow will be contributing a series of guest blog posts leading up to her Trek 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. [...]
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: [...]
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!? [...]
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). [...]
Guest post by Ann Brazeau [...]
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. [...]
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. [...]
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. [...]
About the Blog
Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..