You have a right to know...
Along with all those who have helped build and maintain our MPNforum with their creative work, those who serve on the MPNclinic Roundtable, on the magazine’s Editorial Board, who volunteer time to manage projects, who proofread and edit copy, and provide comments, friendship, counsel or simply join us on the 15th of each month for a fresh edition of the magazine,, you have joined the ranks of stakeholders in the Forum.
You have a right to know what we’re up to and are most welcome to take a hand in building our Forum at every level. MPNforum is an international community-wide project open to all MPN patients, caregivers and healthcare providers. To jump in, find your place, just read on…or create your own role. It starts by contacting our MPNforum by e-mail.
(And thank you, again, all of you who contributed to our supplemental “Call Me Crazy” fundraiser. Together, you got the job done! We’re upgrading our computer systems and have operational breathing room to plan for 2013.)
Here is our year-end report on operations and objectives for 2013.
What are we
Organization and capital
Where are we going?
What are we?
MPNforum is a not for profit patient and caretaker collective organized to support MPN patients, their families, friends and healthcare providers.
Support all MPN patients, families, caregivers and healthcare providers by reporting on science and technology news while providing a lively graphic platform for community education, communications and social interaction.
MPNforum has had two major impacts .
There’s the human connection, the relationships that have sprung up on our pages, in our exchanges, our posts on the Facebook page. Decisions to go ahead with medical procedures are supported, recoveries applauded, setbacks and death grieved over. Over the past two years, there has been so much life shared, so much human concern, experience, and compassion exchanged..
The more shadowy impact, the sheer number of MPN patients and caregivers reached, is more difficult to decipher.
There have been 128,148 visits to our pages from readers from 123 nations. It’s hard to know exactly what 128,000 clicks means. One thing it surely means is somewhere in the world someone’s finger presses on a keyboard or portable device to bring an MPNforum article on to his or her computer. It’s an act, a selection and a choice to visit a page that would not exist if hundreds of us had not assembled to tell our stories, share our experiences of our myeloproliferative neoplasm life.
And it has already happened 128,000 times.
MPNforum started as a personal blog. Without any formal organization, without a plan beyond the next issue, we just started to grow into an on-line magazine, the world’s first and only monthly publication fully devoted to MPN patients and caregivers.
In the beginning much of the load necessarily was lifted by few hands, those who organized, published the magazine and produced articles and columns and did what little administration was required to meet schedules and maintain subscriber lists and the Facebook page.
We have come a long way and more than two dozen people are now engaged in the work of the Forum and several dozen have chipped in donations from $5 to >$100 to keep the lights on. The part-time job of publishing and editing MPNforum soon became a full-time life, the passion an obsession. Friends, caregivers, blood brothers and sisters all contributed their work. Physicians became friends, volunteered their services.
Clinical investigators, drug company executives, the Foundation, geneticists and professors all opened their doors to us, threw open their doors to the MPN community..
And with each issue, without the necessary structure, planning, and capital, seemingly against all odds, MPNforum continued to grow. And run into difficulties. We’ve clawed, wobbled and struggled our way to this point. Now there is a real need to put MPNforum on a sustaining, organized basis. MPNforum cannot depend on just a few individuals to achieve our objectives.
Organization and capital:
We have operated with a loose association of active volunteers and advisers. To achieve sustainability, we need a Board to provide oversight and guidance. A small part-time staff to supplement volunteer work. Capital to cover operating expenses. And we can’t do that last by sporadically passing the hat for spare change. Or count on the generosity of a few. Recruitment of a Board and creation of an operating plan and formal non-profit charter is at the top of our agenda as we close out 2012. And after that?
Where are we going?
Seven objectives for 2013.
MPNclinic — -Expand outreach for MPN patients and caregivers who are not in metropolitan areas or live where there is a real shortage of MPN knowledgeable hematologists.
The Fatigue Project — Support investigators working on techniques to relieve MPN associated fatigue by supplying research assistance, recruitment of participating patients, preparation of reports and MPN Patient Guides.
Start direct multimedia reporting of events incorporating audio and video in MPNforum Magazine.
Advocate for patients who need an advocate. Help develop a Corps of Advocates with participating patient support groups to provide new and existing MPN patients with support and counsel. As manager of the old MPDchat, we created the Buddy system to match newly diagnosed patients who had many concerns with experienced patients i n their same MPN phenotype. The Advocate system would offer another much needed layer of patient support. The MPN Patient Advocate will be patient-authorized to get help and ask questions for the patient in all areas — diagnostics, therapy, insurance, travel, reimbursements, etc.
Establish a budget, annual operating plan, board of directors, and a small operating staff. We’re starting with a $40,000 budget objective for 2013 to cover salaries, rent, operating expense, insurance, legal fees, travel, equipment maintenance, bookkeeping and supplies. The plan is to apply for sustaining grants while expanding service to directly aid MPN patients and caregivers
Improve magazine production, move to a new web site, redesign and upgrade..
Support MPN Research Foundation by raising funds for basic scientific research, organize fund-raisers, support awareness days.
This is a summary and blueprint awaiting your input. Any thoughts you have on achieving or modifying objectives, any ideas on how to make MPNforum better fill our needs as patients and caregivers are welcome…and needed.
Despite dramatic recent advances, the MPN blood cancers are still largely unexplored territory, presenting distinct challenges for patients. It’s an honor for all of us at MPNforum working together in this common endeavor that has already helped so many of us find a way to meet those challenges.
If you want to take a direct hand in any of MPNforum publishing or support activities, please get in touch: ourMPNforum@gmail.com
..And thanks for all your good thoughts, all your support,