Chicago MPN Roundtable publishes first article

We've mentioned before about our low-cost, high-quality project titled the MPN Chicago Roundtable. Basically, it is a group of clinicians and researchers representing some of the great Chicagoland hospitals who gather around the MPN Research Foundation conference table to discuss what they're working on individually and what they can do jointly to accelerate and improve treatment options for people living with PV, ET, and MF. 

We are pleased to announce that this group has published it's first joint piece of research titled "Age-related differences in disease characteristics and clinical outcomes in polycythemia vera." The colaborators from the MPN Chicago Roundtable include Brady Stein (Northwestern), Jamile Shammo (Rush), Damiano Rondelli (University of Illinois at Chicago), Toyosi Odenike (University of Chicago) and Laura Michaelis (Loyola). We are so proud that the Foundation has a role to play in helping to pull this group together, all for the cost of a few pizzas, and look forward to what else comes from their meeting of the minds. 

MPN on the web

Lina, a young woman living with Essential Thrombocythemia, blogs about changing her medication and dealing with migraines: http://linampn.wordpress.com/2013/05/11/an-overdue-update/#more-202

MPN Forum is talking about the "silent gene" http://mpnforum.com/the-silent-gene/

Starting back up that trail

Annette DeBow will be contributing a series of gues blog posts leading up to her Trek for a Cure

Annette speaking at a Trail Mixer event

This disease has changed my life in so many ways, and most of the changes have been unexpected.

When I was diagnosed in 2008, I had a 6 month old daughter and I was already dealing with so many changes around being a new mother, I couldn’t even wrap my head around what it meant to be diagnosed with a rare disease. The first doctor who suspected that something was wrong was my family doctor. I had taken my daughter to her 6 month check up and the doctor instantly knew that something was wrong, she said, “You look thin and tired- you need a CBC.” Later that week I received a call from her, and while she has had a patient with Polycythemia Vera in the past, could not remember the full name of the MPN and told me I had, “poly something and I’ll recheck your CBC.” Well, it was confirmed and with a HCT of 65, I was off to get phlebotomized –weekly and then every other week and then once a month until my HCT was back in the low 40s.

I shared the news of my diagnosis with family members and a few friends but that was it. I did not want others to know I was ill because I have always been an incredibly active and fit person. I was the woman who mountain biked the black diamond trails at ski resorts every summer. Learning how to interface with the medical community was something completely new and at times frustrating. I also learned that there was not a lot of research going on for rare diseases, like MNPs. It wasn’t until I decided to raise money for the MPN Research Foundation by hiking the John Muir Trail in 2010, that I really experienced another change. I learned about the power of advocacy. When I asked my community to help raise money for research, folks responded from all over the world to give. Wow, what a great feeling of support! That support, which led to more energy and enthusiasm, has me heading to the hills again to trek the Sierras. I hope I can share more of my experiences as I prepare for Trek for a Cure 2013.

Dr. Mesa on Late-Stage Trials in Myelofibrosis

Dr. Mesa recently filmed a video for OncLive in which he describes some Phase 3 clinical trials ongoing for Myelofibrosis. 

Bealers' Ride for a Cure

By guest blogger Jen Bealer

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.

Between 2001 and 2013, a lot has been learned about MPN's, largely in part due to the MPN Research Foundation, which is the only independent organization focused exclusively on MPN research.

Our grandma only had one option for treatment, which had the side effect of giving her Leukemia. Now, ten years later, my mom is being successfully treated. We owe a great deal to this foundation, and try to give back to them every way we can.

My brother and I, along with our awesome friends, will ride 40 miles for a cure. We will be riding in the Five Boro Bike Tour in New York City on May 5-just in time for Mother's Day.  We will also have a fun cheering section along the route, so please feel free to join! All proceeds benefit MPN Research Foundation, and will go directly to the organization when you make a donation. 

Click here to support Jen and MPN Research

Spread the word. We made over $11,000 at our bowling event last year and hope to beat our record by race day!  

Hope to see you there!

MF Challenge proposals due today!

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. 

In 2012 we awarded $100,000 each for four different projects, the goal of which is to stop or reverse fibrosis. Progress reports on the first wave are due later this year, and we're hoping to find 4 more projects worthy of the funds to continue in 2013-14. We set up a microsite to keep patients, their friends & families up to date, where you can also sign up for alerts. 

News from Mt. Sinai on their Panobinostat trial for MF

Drs. Ron Hoffman and John Mascerenhas of Mt. Sinai School of Medicine in New York have reported positive outcomes from their Phase I trial of panobinostat in myelofibrosis patients. Their article published in the British Journal of Haematology states that significant improvement occurred for patients on low dosages of Panobinostat.

Click here for the full article from Mt. Sinai's Medicine Matters blog.

Click here for the study abstract.