MF HIKE

"With research there is hope"

"WITH RESEARCH THERE IS HOPE"

On August 19, 2014, Julie Libon was diagnosed with Myelofibrosis. She learned that MF is a rare blood cancer that affects approximately 16,500 to 18,000 people in the United States with no cure and no treatments to slow down the progression of this disease.

After her diagnosis, she and her family felt compelled to act. They formed HikeMF, an organization that sponsors an annual hike with the sole purpose fund research on Myelofibrosis. The funds raised from the hike support the work of the MPN Research Foundation.

On Saturday, May 30th they had their first annual hike at beautiful Moose Hill Wildlife Sanctuary. Over 125 people laced up their boots and joined the fun. After hiking for about 90 minutes on the Bluff Overlook Trail, the hikers had refreshments, a silent auction, and raffles in the main building. They raised over $19,000 and they expect to hit $20,000 soon. Not bad when their original goal was $10,000 and they expected about 25 people hiking.

If you're inspired by Julie's actions email Bill @ wcrowley@mpnresearchfoundation.org with your idea, big or small.

On August 19, 2014, Julie Libon was diagnosed with Myelofibrosis. She learned that MF is a rare blood cancer that affects approximately 16,500 to 18,000 people in the United States with no cure and no treatments to slow down the progression of this disease.

After her diagnosis, she and her family felt compelled to act. They formed HikeMF, an organization that sponsors an annual hike with the sole purpose fund research on Myelofibrosis. The funds raised from the hike support the work of the MPN Research Foundation.

On Saturday, May 30th they had their first annual hike at beautiful Moose Hill Wildlife Sanctuary. Over 125 people laced up their boots and joined the fun. After hiking for about 90 minutes on the Bluff Overlook Trail, the hikers had refreshments, a silent auction, and raffles in the main building. They raised over $19,000 and they expect to hit $20,000 soon. Not bad when their original goal was $10,000 and they expected about 25 people hiking.
If you're inspired by Julie's actions get in touch with your idea, big or small.
- See more at: http://www.mpnresearchfoundation.org/2015-Hike-MF#sthash.41Fitl0k.dpuf

On August 19, 2014, Julie Libon was diagnosed with Myelofibrosis. She learned that MF is a rare blood cancer that affects approximately 16,500 to 18,000 people in the United States with no cure and no treatments to slow down the progression of this disease.

After her diagnosis, she and her family felt compelled to act. They formed HikeMF, an organization that sponsors an annual hike with the sole purpose fund research on Myelofibrosis. The funds raised from the hike support the work of the MPN Research Foundation.

On Saturday, May 30th they had their first annual hike at beautiful Moose Hill Wildlife Sanctuary. Over 125 people laced up their boots and joined the fun. After hiking for about 90 minutes on the Bluff Overlook Trail, the hikers had refreshments, a silent auction, and raffles in the main building. They raised over $19,000 and they expect to hit $20,000 soon. Not bad when their original goal was $10,000 and they expected about 25 people hiking.
If you're inspired by Julie's actions get in touch with your idea, big or small.
- See more at: http://www.mpnresearchfoundation.org/2015-Hike-MF#sthash.41Fitl0k.dpuf

MPNs made news at ASCO this year

The American Society of Clinical Oncology has its big meeting each year in Chicago in early June. In the past solid tumor cancers have received the most attention, saving blood cancer announcements for the American Society of Hematology meeting where the focus is more narrow. This year, however, was different, with big news coming from Baxter/CTIBiopharma on their Pacritinib data. Dr. Ruben Mesa presented at a press conference on progress for this drug, which is intended for people with myelofibrosis who have low platelet counts.

Patient Power was also on the scene and filmed a roundtable discussion with Dr. Mesa, Dr. Allison Moliterno, Dr. Naveen Pemmaraju and PV to MF patient Heidi. They discussed the trends in therapy for MPNs, especially in the wake of the 10 year anniversary of the discovery of the JAK2 mutation upon which much work developing drugs has been focused. Also mentioned was a presentation on a 5 year follow-up of people who had underwent allogenic stem cell transplants for myelofibrosis. Heidi also discussed how she as a patient has sought out information, choosing to go both to her doctor as well as the online forums. According to Heidi, "patients should do their own research from multiple reputable sources". 

Click here for the "All About Myelofibrosis" infographic.