You may have seen articles recently (here and here are two examples) on the issue of patient advocacy organizations or physicians taking funds from the pharmaceutical industry. We at MPNRF have been thinking a lot about this for years. In 2011 we adopted and published a policy on how MPNRF would maintain independence and neutrality in light of accepting contributions from sources that include pharmaceutical and smaller biotech companies. These funds come in the form of support for: [...]
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. [...]
Giving Tuesday: When America Gives as Good as it Gets. [...]
You can help change your prognosis! [...]
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! [...]
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. [...]
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. [...]
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. [...]
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. [...]
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. [...]
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. [...]
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. [...]
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. [...]
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!? [...]
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. [...]
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 firstname.lastname@example.org or 312-683-7249. [...]
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..