Rare MPN blood cancer resource and awareness center turns to Generosity by IndieGogo to crowdfund its work for MPN cancer patients
When, in 2009, David Wallace was first diagnosed with Polycythemia Vera, he was puzzled by the rare blood cancer that he had just been told he had. This 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”, comments Mr. Wallace. “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 difficult phase in David Wallace’s life is what led him to start the PV Reporter (http://www.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 Wallace was first was diagnosed.
“This was obviously not an easy moment 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”, comments the Founder of the PV Reporter.
The PV Reporter’s mission — along with that of MPN Cancer Connection, its sister-non-profit organization, dedicated to raise funds for this work — is to continue helping MPN patients by expanding the wide range of resources available through PV Reporter and MPN Cancer Connection, empowering patients to better understand treatment options and improve patient care by recognizing MPNs are a cancer, offering access to a wide range of benefits and program assistance.
“However, doing this work on his own and funding it mainly through his own resources has constantly added new layers of difficulties to doing this important work, which is why he has decided to take it to crowdfunding, to find the necessary support to keep this project going”, Mr. Wallace added.
“Our crowdfunding campaign is now online at http://igg.me/at/N-auHf4QcoU, on Generosity, by IndieGogo, where people can make a contribution to help this important cause.”
The PV Reporter and MPN Cancer Connection work by David Wallace have been featured on the Doctors TV Show (http://www.thedoctorstv.com/videos/rare-blood-cancers-what-you-need-to-know). He has attended ASH 2014 and ASH 2015, the largest hematology conference in the world, with full press credentials (see one of the videos here http://www.pvreporter.com/ash-2015-dr-john-mascarenhas-reviews-clinical-trials-with-pv-reporter/), further validating the importance of Mr. Wallace’s work. He was also interviewed by one of the prominent patient advocacy groups about his mission - http://www.oncologytube.com/v/1036961/david-wallace-shares-ash15-highlights-for-mpn-patients.
For more information, please visit The IndieGogo Crowd Funding Campaign - http://igg.me/at/N-auHf4QcoU, http://www.pvreporter.com/ and https://mpncancerconnection.org/.
PV Reporter was created to fill a gap in the MPN patient community providing “easy access” to pertinent information on all Myeloproliferative Neoplasms. It has become the MPN Patient Research Center featuring comprehensive, relevant, update to date information offering patients the tools to make better decisions affecting their care.
About David Wallace
Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. David Wallace was 47 when he was diagnosed with polycythemia vera (PV) in 2009. A self-proclaimed “aspiring web designer, publisher, writer, patient advocate and chief bottle washer,” David used his diagnosis as a motivating factor to push himself to always learn something new. Utilizing social media to connect with informed patients and to gain a better understanding of emerging treatments, he found himself in an intense period of adjusting to a new norm of having a rare blood cancer for which doctors didn’t have a standard protocol for treatment. David developed PVReporter.com, a comprehensive, easy-to-navigate, patient-focused website for myeloproliferative neoplasms (MPNs). David’s philosophy is straightforward: “Educating the patient is essential, so the patient can guide their physician to meet his or her needs.” It should be noted that he financed the website and non-profit organization completely out of pocket and hopes to find sponsors, joint venture opportunities and volunteers in the near future.
(Contact info) Contact:
MPN Connection Cancer — PV Reporter
7427 Matthews-Mint Hill Rd.
Suite 105, PMB 274
Mint Hill, NC 28227