International MPN News, Science & Opinion

Julie Libon and family — “Take a hike!”

 

 

Julie and Lori, sisters, two points of light.

Julie and Lori, sisters, two points of light.

This Saturday — May 30, 2015 —  a little bit of MPN history will be written in an event designed to help end myelofibrosis. You can be part of it.

HikeMF is a way to fight MF conceived by a young woman who wasn’t going to sit still for her diagnosis.

Here’s how it began:

“It was a beautiful day in NYC,” said Julie Libon,  “when my husband 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!”

Julie loves to hike and with her sister, Lori Small, enjoyed their time walking the woods and trails around Sharon, Massachusetts. “We have to do something,” Lori said when when Julie broke the news of her diagnosis.  What they came up with was HikeMF, a 90 minute walk in the Moose Hill Wildlife Sanctuary in Sharon. Friends and relatives would kick in a $15 registration fee and some could donate to the MPN Research Foundation.  Lori thought they might get 25 people to participate.

And that” amazing family” jumped right on in. Julie libon familyThe sisters along with husband Bob, mobilized the family.One daughter worked social media, another daugher is a graphic designer. They  started slow, did their research and decided on the MPN Research Foundation as the beneficiary. They set up a Facebook page and means to handle donations on line along with a HikeMF web page.,  Then they called on friends to join in.

My husband Bob was a good sounding board for ideas, Alyssa was in charge of social media, Megan was in charge of setting up and maintaining our website and registration page. She also designed our t-shirts. Dan and Mike will be the heavy lifters on the day of the event, helping us set up and break down.”

The response was enthusiastic.

“We got donations from people who have MF or a parent has and they made donations in their honor. Many wrote me with their whole story. One young woman in Hoboken, diagnosed when I was, wants to get involved. We’re helping a woman in Minnesota whose father has MF. We are going to meet and she wants to get involved next year.”

And remember the predicted turnout of 25 hikers? “As we go to press there are over 125 participants and more than $10,000 has been donated to the special MPNRF First Giving event page.

Here’s how you can get involved:

Take a hike:   If you’re near the Moose Hill Wildlife Sancturay in Sharon, MA, fill up your water bottle and join on in. You can sign up here.  To learn more you can visit her website.  or the Facebook page    And if you can’t make it this time around, consider making a donation to the MPN Research Foundation in honor of Julie’s — and her family’s and friends’ — efforts to help all of us beat MPNs. 

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