Monday, August 31, 2015

Tomorrow is the first day of September and this means it's the first day of Blood Cancer Awareness Month (BCAM).

All through September, share your stories & advice -- help us in the fight against blood cancer. We'll be using BCAM throughout September and we encourage you to do the same!

You may know someone living with a chronic condition and not know it. People with Myelofibrosis, Essential Thrombocythemia and Polycythemia Vera may not show any outward sign but they are suffering with some debilitating symptoms. Fatigue, uncontrolled itching, bone and joint pain are just three common symptoms. They know how important it is to continue to fund life-saving research into these cancers.

While the National Institutes for Health is tasked with funding medical research, their budget is often focused on diseases that affect larger populations. It is up to the MPN patient community to band together to make some noise when possible to remind people they have the ability to change their prognosis to remind people that they do have the ability to change their prognosis. During September, Blood Cancer Awareness Month, we're asking anyone who knows someone living with one of these conditions to change their FB profile image as we've seen done for so many other (worthy!) causes. . During September, Blood Cancer Awareness Month, we’re asking patients and anyone who knows someone living with one of these conditions to change their Facebook profile image as we’ve seen done for so many other worthy causes.

This is meaningful to a population of people living with a rare cancer, but it isn’t all that we’re asking people to do. Make a donation today: ( and share with your family and friends that you are making a difference and want them to  make some noise to help you change your prognosis. We need to make everyone aware that there are people in our community fighting to find better treatments and cures.

These are some tiles you can use on your Facebook posts.This veers slightly into slacktivism, but it isn't all that we're asking people to do, and it is meaningful to a population of folks with rare disease. So change your profile pic, make a donation to support research ( if you can) and just know that there are people out there fighting to find cures and better treatments and a greater understanding of what ails you (and what may ail you one day). ‪#‎BCAM



Monday, August 24, 2015

A Special Love Story

Over the last few months, one of our stars has been quietly completing a truly remarkable achievement. Rochelle Moore is about to complete her 4th century ride to raise money for MPN research. If you are not a cyclist, a century is a 100 mile bike ride that is completed in one day. It is a very grueling event. Doing four century rides in four months is a very difficult feat.

Rochelle started in June with a 103  mile ride called the Pumpkinvine Bike Ride. On July 11th Rochelle completed the RAIN Ride. That’s a 163 mile Ride Across Indiana. On September 13th, Rochelle will complete a ride called Bike Michiana, which takes place by the Michigan and Indiana state borders. She will finish her challenge with the Apple Cider Century on September 27th.

What is so remarkable about this? Rochelle is not a professional cyclist. She will even tell you she is not an endurance athlete. But, she is very motivated. You see, she is a part of a bittersweet love story.

Rochelle’s parents have been married for 52 years and are true soulmates.  They have loved each other through great joys and deep sorrows.  Rochelle’s mom was diagnosed with Myelofibrosis.  Her dad retired as a Hospice Chaplain to spend more time with her.  Unfortunately, he has been diagnosed with ALS (Lou Gehrig's disease). They are now both on home hospice. Rochelle moved in their home over 7 months ago to help care for them and have the privilege of witnessing their incredibly sweet love daily.

Rochelle is not alone. Her daughter, Beth, watches out for Rochelle (and her grandparents) and they are biking together.  Money raised from the 4 rides will benefit MPN Research Foundation. Their goal is to raise $10 per mile for a total of $4K for the Foundation.

Check Rochelle’s Firstgiving page for updates on her progress and donate while you’re visiting.