Wednesday, June 6, 2012

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.

Reviewers were instructed to consider not only the scientific merit of the proposal, but also whether it was a novel approach to stopping or reversing fibrosis. Both organizations are motivated to support high quality projects that would not otherwise be pursued by bigger funding groups such as NIH. 

We will be announcing the grant recipients in July. Between now and July we will be meeting with the scientific advisory panels from both organizations – which include some patients – to decide which proposals have the right mix of qualities to go after myelofibrosis.

Tuesday, April 24, 2012

What are the "Rounds" programs...

... and why exactly does it matter to MPN patients?

The MPN Research Foundation began working with AAMDSI last year on the Rounds, an event in which clinicians hear directly from each other about how they treat patients who present with various scenarios. Given that MDS (myelodysplastic syndrome) is somewhat similar to MPN, this program is an opportunity for both organizations to reach out to physicians who see both MPN and MDS patients simultaneously.  

Drs. Damiano Rondelli and Santosh Saraf present at Rounds
Our partnership with AAMDSI produced our first Rounds in September 2011. During this program we are joined by physicians across the Chicagoland area to hear two presentations of a clinical case: one on MDS and one on MPN. On April 25th the the MPN portion was presented by Drs. Damiano Rondelli and Santosh Sarof from the University of Illinois at Chicago who discussed allogenic stem cell transplants. 

Attendees are given continuing medical education (or CME) credit for their participation. Physicians must earn a certain amount of CME each year in order to continue practicing. We also distributed information on local ongoing clinical trials focused on MPNs as well as MPN patient brochures. Our hope is that physicians will share the information they learned with each other and their patients.  
Dr. Laura Michaelis of Loyola asks a question

This kind of program helps us towards our goal of keeping MPN doctors apprised of the latest in treatment and research news so that they in turn can give the highest quality care possible to their patients. If anyone has questions about this program feel free to contact us at 312-683-7249 or

Wednesday, February 15, 2012

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. 

First, we have the continuation of our regularly scheduled grant programs. Soon we'll begin receiving progress reports from the first year of the 8 grants we funded in 2011, right in time for us to begin the 2nd year of funding in April. 

Second, in January we announced a new partnership with the Leukemia & Lymphoma Society. This collaboration is focused on stopping or reversing fibrosis. We announced the request for proposals for these concept grants last month and are pleased at the excitement that's been demonstrated already. 

Finally, we've also been able to announce that Cigna now covers Pegasys. This was the result of MPN Research Foundation advocacy on behalf of patients who have been unable to have the medication covered for MPNs, which is considered off-label use.  

This is just a sampling of what we've got going on and we look forward to sharing more in our Spring newsletter, which should hit mailboxes and inboxes sometime around April.