Tag Archive for: PV Reporter

Spotlight on: MPN Cancer Connection (MPN-CC)

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Interview with David Wallace, publisher of PVReporter, founder of MPN Cancer Connection (MPN-CC), and PEN Advisory Board Member. In this interview, David explains why he started a non-profit, his goals, and some of the obstacles he has faced so far.

Kara:

Why did you decide to create MPN Cancer Connection (MPN-CC)?

David:

MPN Cancer Connection was launched as a non-profit in 2015 to provide a channel for generating financial support for PV Reporter. To fully advance our cause, primarily patient education and advocacy and make it sustainable, financial support would be a necessity. The website and associated expenses were run 98% out of pocket for 2 ½ years. I also felt it was important to promote MPN awareness as a cancer, providing patients benefits and programs that would not otherwise be available.

Kara:

How did you decide on the non-profit route?

David:

The non-profit route looked like the best logical solution to our financial issues. I had several potential donors, mention they would be willing to help out if the benefits of a tax deductible donation were available. I was also more comfortable pursuing sponsorship, partnerships and other projects by going the 501©(3) route. Somehow, I believed if I chose this direction, it would lead to success. Early indications are moving the needle in the green zone.

Kara:

When starting PV Reporter and MPN-CC, what were your goals for both organizations?

David:

That’s a great question. For PV Reporter I had several goals in mind. First of all I wanted to create a website with “easy access” to pertinent information on MPN’s, in an easy to navigate format. The website was built around the “custom MPN search engine,” MPN Search. I wanted the articles to be “patient friendly,” easy to read and understand without having to search for definitions to complex terminology. I also discovered an opportunity to “share the pulse” on topics of interest I found frequently discussed in the Facebook forums. I had no idea PV Reporter would take off like it has running into the 3rd year in August 2016.

The Five Year Vision for MPN-CC can be found on our website.

Kara:

What are some of the obstacles you faced when starting MPN-CC?

David:

The biggest obstacles were funding and “know how” to start a non-profit. My first call was to an attorney who wanted $5000 to assist on the paperwork. That was rather dejecting (that’s putting it mildly), but I kept looking for affordable assistance. I was fortunate to find a super nice lady, Julie, who runs a nonprofit consulting firm, profiled in one of our small local newspapers. After our first meeting at a nearby coffee shop, I knew she was the mentor I needed. She believed in me, my cause and understood the benefit I was providing patients through PV Reporter. Without her guidance in walking me through the tedious paperwork process, I might have thrown in the towel.

Over the last year and half, I attended two non-profit conferences. This offered a great learning experience and opportunity to network. Learning to run a non-profit while keeping PV Reporter on the leading edge has been a major challenge.

Kara:

How do you fund your non-profit?

David:

A very loyal PV Reporter reader from the early days came in with a generous donation that helped cover some of my initial costs and provided the motivation I needed to know I was on the right path. Several friends/patients have also shown their support as well. I am most appreciative, as they were the cornerstone that provided the means to keep my projects moving forward.

In July 2016, I landed an advertising sponsorship on PV Reporter that should ease the funding burden for a while, allowing me to create new patient resources and programs. I also intend to seek additional sponsors, grant opportunities and other sources of funding.

Kara:

What have I learned from creating PV Reporter and MPN-CC?

David:

First of all, I found myself in a role that was totally new as a patient leader/advocate. I realized how much I learned from other patients over the years and how important it is to give back to the MPN community.

Cultivating a supportive core group of fellow patients and partners were instrumental to the success of PV Reporter and MPN-CC.

Kara:

What are your near-term goals?

David:

I have a number of them; the most basic is continued existence of both organizations. One of the most important goals is for me to connect with knowledgeable individuals in the non-profit space in order to outsource certain responsibilities. Bookkeeping was the first area I took on help with. Lord knows, I have enough to learn and becoming a QuickBooks expert was not high on my list.

I recently started a project with a non-profit consultant who is helping me put the pieces in place for growth and sustainability. If things go according to plan, I believe we will accomplish our goals and be able to expand our reach.

“Well, You Don’t Look Sick”

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A Phrase Commonly Heard by MPN Patients

 

"You look fine to me!"

“You look fine to me!”

(Editor’s Note: This post was written by PV patient, PEN Advisory Board member, and PV Reporter founder, David Wallace. The post was originally published in the PV Reporter.)

Isn’t it amazing how well we look?  In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living.  Behind the facade of  “well-appearing” individuals, we silently suffer from a long list of symptoms including:

  • Fatigue, the #1 complaint and it can be debilitating at times
  • Pain (which can manifest itself in bones, joints, abdomen, back, arms, legs….and the list goes on)
  • Itching (more formally called pruritus in the medical world)
  • Headaches
  • Gout
  • Neuropathy
  • Dyspnea (a fancy medical term for shortness of breath)
  • Constitutional symptoms
  • Night sweats
  • And the list goes on – more symptoms here

I doubt there are many among us who have not heard family or friends utter the familiar phrase“you don’t look sick.”  Not really something we want to hear as it diminishes the “quality of life” struggles we go through living with MPNs.

Living in the “World of the Well” and the “World of the Sick”

MPN puzzle

Human Jigsaw Puzzle

Although we walk proudly in the “world of the well”, many of us live in the“world of the sick” or perhaps bouncing between the two worlds depending on our blood counts, spleen size, level of fibrosis or other intangibles.  Almost like a “dual citizenship”, we stand among the chronically ill.  Recent estimates put Chronic Illness at about 50% in the United States.  Many myeloproliferative neoplasm patients suffer from multiple symptoms turning us into “human jigsaw puzzles” waiting to be put together by doctors who frequently disagree on a standard course of treatment.

The Spoon Theory

Why all the ramblings about symptoms and issues we all know?  The above is a preamble to a post I read recently called the Spoon Theory by Christine Miserandino.  She suffers from Lupus and provides an outstanding narrative on living with a chronic illness – using spoons as an analogy for how much energy she can expend in a given day.

While Lupus in not an MPN, the article stands as a common thread for all of us who live with “invisible chronic illness.”

The upside: live every day to the fullest!