Thursday, April 25, 2013

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.

Monday, April 22, 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. 

Wednesday, April 17, 2013

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. 

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!

Monday, April 1, 2013

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.