Help Rare MPN Cancer Awareness and Support Project via our Crowd Funding Campaign
by David Wallace
When, in 2009, David Wallace was first diagnosed with Polycythemia Vera, I was truly puzzled by the rare blood cancer that I had just been told I had. It is one of the three MPNs – Myeloproliferative Neoplasms (the other two being Essential Thrombocythemia and Myelofibrosis), which are a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally.
I had never heard about it and I soon learned that finding information about it was nothing short of a daunting task. Worse than that, I discovered that doctors do not really have a standard protocol for treating my disease. In actual fact, I soon realized that MPN patients were often not even recognized as cancer patients – despite the fact that these are rare but existing forms of blood cancer.
This was obviously a very difficult time for me. However, instead of letting myself be brought down by this disease, I actually felt an urgent drive to do an extensive search about exactly what this problem is, how it works and affects patients, what are the possible therapies, and what can an MPN patient do to overcome many of the challenges it throws our way and successfully live with this rare illness.
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A Decision to Help Others
Fast forward four years later; I decided to create the PV Reporter (https://pvreporter.com/), the patient-focused, comprehensive online awareness and information resource that provides guidance and support to other MPN patients that did not exist when I first was diagnosed.
I decided to make it my mission not only to understand and overcome my condition but also to help others – who have any one of these three rare cancers – to become more informed and better equipped to face this puzzling and rare disease through this online support resource. To try to ensure that PV Reporter could progress, I’ve also founded MPN Cancer Connection (https://mpncancerconnection.org/), a non-profit dedicated to raising funds to support the PV Reporter MPN resource and information center.
However, doing this work on my own and funding it mainly through my own resources, has constantly added new layers of financial difficulties to doing this important work.
My MPN Education & Advocacy Work:
- Has been featured on the Doctors TV Show (http://www.thedoctorstv.com/videos/rare-blood-cancers-what-you-need-to-know),
- I have attended ASH 2014 and ASH 2015, the largest hematology conference in the world, with full Press Credentials (you can see one of the videos here https://pvreporter.com/ash-2015-dr-john-mascarenhas-reviews-clinical-trials-with-pv-reporter/).
- I was also interviewed by one of the prominent patient advocacy groups about my mission - http://www.oncologytube.com/v/1036961/david-wallace-shares-ash15-highlights-for-mpn-patients
Please Make a Contribution - Giving us the Opportunity to Grow our Support
Yes, I have been fortunate enough to take PV Reporter far in what it has been doing for MPN patients – and for the wealth of information and support that it has served to the medical community.
In order to have the means to go on doing this work, I decided to take this project to the crowd, so here I am, asking you to please help fund this important and rare work that offers precious guidance to patients with this rare form of cancer - click here for the news release.
You can help by:
- Making a contribution – every dollar helps!
- Sharing this campaign with your friends and family members
- Sharing the work of https://pvreporter.com/ and https://mpncancerconnection.org/
Thank you and I hope to be reporting to you soon, with great news about the progress of our project.
