“With research there is hope!”
Tuesday, August 19, 2014 was a beautiful, sunny day in New York City. Julie Libon did not know it that morning, but she was about to experience what all MPN patients go through. She and her husband, Bobby, walked into Memorial Sloan Kettering Cancer Center and received her diagnosis of Myelofibrosis.
Like most MPN patients, she did not know much about Myelofibrosis (MF) at the time, but she learned quickly. Julie discovered that MF was a rare blood cancer that affects over 13,000 people in the U.S. It is one of three closely related blood cancers called Myeloproliferative Neoplasms (MPNs). The only approved treatment option for her is Jakafi, which addresses some symptoms but is not a cure. She learned that the only cure is a Stem Cell Transplant, an option only used when a patient’s disease is in danger of converting to Acute Myeloid Leukemia (AML).
Despite the grim news, Julie feels fortunate. Her disease was diagnosed early and she is doing well. She also knows that time is of the essence for many other patients and that with no cure, MF will worsen and eventually some patients will convert to AML.
Julie felt compelled to do something to help find better treatments and eventually a cure. Julie and her family wanted to help fund MPN research and they formed HikeMF.
On May 30, 2015, Julie, her family and friends will host a 90-minute hike at the beautiful Moose Hill Wildlife Sanctuary in Sharon, MA. The hike will take place on the Bluff Overlook Trail and is good for all ages. To learn more you can visit her website at www.hikemf.org. If you are on Facebook and want to help, Julie created a Facebook page at www.facebook.com/hikemf. Visit her page and encourage her efforts.
If you want to lace up your boots and join the hike, you can sign up for the hike at https://www.eventbrite.com/e/hikemf-registration-15117318306. If a 90-minute hike is not your thing, you can still help with a contribution at http://www.firstgiving.com/fundraiser/julielibon/hikemf. Julie would greatly appreciate your encouragement and support.
Julie shared this afterthought about the day she received her diagnosis: “It was a beautiful day in NYC when Bobby and I walked into Memorial Sloan Kettering Cancer Center and received my diagnosis and it was still a beautiful day when we walked out with a new normal. Life is good………especially when you have an amazing family and wonderful friends!”
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.