MPN patients and their families are willing to do anything to develop better treatments and find a cure. They literally have climbed mountains. One family member registered for a 40-mile bike ride and she did not even own a bike! People have completed marathons and iron-man triathlons. Every year patients plan 5K runs, fun bike rides and even a poker run.
These people have taken the challenge to raise funds for MPN research. Read their stories and if you are inspired, turn your next golf outing, marathon or special event into an opportunity to help the MPN Research Foundation continue to fund critical research. Contact us for more information.
"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!”
Getting Crafty With Bracelets for Taylor
For some people walking, biking or running marathons to raise funds to help find better treatments and a cure for MPNs is easy. But for others, another way might be better. This is an example of what one family is doing. Elizabeth Gross' doctor diagnosed her with essential thrombocythemia and helped prevent a stroke. Although she remains plagued with fatigue, she and her husband Marc decided to surprise their daughter Page with a cross country trip to see Taylor Swift in concert, where they got to meet Taylor and later received a big box of autographed memorabilia. Taylor even sang an additional song at the concert called ‘Best Day’ about Taylor and her mom, and dedicated it to the mother and daughter she’d just met! It was truly a dream come true from Page’s hero, and something the Gross’ will never forget.
The difference Taylor made in their lives, in response to Elizabeth’s cancer letter to her, has reset the ‘oomph’ in their spirits and reaffirmed in them the goodness of others. Because of this, the Gross Family is on a mission to pay forward Taylor’s kindness by making a difference in as many lives of others as they can. To do so, the family is handcrafting TaylorBracelets. Each bracelet is in tribute to Taylor for all the good that she does for so many, and they’re donating the profits from each sale to fund Blood Cancer research through the MPN Research Foundation. Click here to see their selection of bracelets.
Al Bolea Memorial Bike Ride
This ride is in memory of the late Al Bolea who lost his gallant fight against Myelofibrosis on September 23, 2005. Al was the co-founder of the Charles River Wheelmen (CRW) and had a profound effect on the people around him. He showed them the importance of valuing and welcoming each person; that riding is about companionship and enjoying the road together.
Each year, a group of his family and friends organize this ride to remember Al, create awareness of Myelofibrosis, encourage donations for MF research, and to have fun! This always popular ride offers routes which travel scenic back roads of Concord, Acton, Carlisle, and Bedford, and even include a surprise lemonade stand.
If you are interested in participating or want information on how to donate, contact Bill Crowley at (312) 683-7226 or firstname.lastname@example.org.
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. I shared the news of my diagnosis with family members and a few friends but that was it.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! Help Annette's 2013 Trek for a Cure
Tim's Run is a 5K run/walk held each year in memory of Timothy J. Flaherty, a firefighter for 33 years with the Portland Fire Department. Tim was an avid gardener, outdoorsmen and family man who passed away August 30th 2011 at only 63 years old, following a courageous fight against Myelofibrosis.
To remember Tim, his family and friends have joined together to honor his memory with a run through his hometown of Yarmouth, Maine. The third annual run will take place during Blood Cancer Awareness Month on Sunday, September 28th, 2014. You can pre-register at their website at http://www.timsrunwalk.com/. For updates or to wish them well visit the Facebook page: https://www.facebook.com/pages/Timothy-J-Flaherty-Myelofibrosis-Fund/362198677195114
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. My brother and I, along with our awesome friends, rode 40 miles for a cure in the Five Boro Bike Tour in New York City on May 5. We raised over $13,000 for MPN research!
My name is JoAnn Mason and I am the parent of an MPN patient. Our daughter was diagnosed with polycythemia vera at age 17.
At the time my husband John and I had never heard of myeloproliferative neoplasms. As parents, we were confused, frightened and eager for answers. We then found the MPN Research Foundation and discovered we were not alone.
We wanted to do something to help further research. Starting with our friends in Washington, D.C. we began a letter writing campaign to raise funds for MPN research and patient advocacy. Our Mason Fund has raised over $500,000 for PV research.