Spotlight on: MPN Cancer Connection (MPN-CC)

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.