International MPN News, Science & Opinion

Straight talk about MPNforum

Straight talk about MPNforum

by Zhenya Senyak

Now look what you did.

When we started, in April, 2011, we asked you to join in this MPNforum patient/caregiver collective to help produce a magazine, a Facebook page, and get us together.  We asked for articles, comments — and when we ran out of cash — we asked you to participate in the Small Donation program.

You always came through.

 Now, when your MPNforum hits your computer each month,  what do you think of what you did?  

Here’s some food for thought:

Your participation in MPNforum is more than just a subscription or an article, a donation or quick read. You’re part of a powerful movement of blood cancer patients and families that has already made a real difference in our lives and our future.

Because of you, MPNforum was able to bring together the MPNclinic,  a blue ribbon panel of MPN specialists, to answer questions posed by patients and physicians….You helped provide the answers that make a critical difference in patient’s lives.

Because of you, 23andMe was able to assemble the world’s first MPN genetic database available for commercial research into causes and cures of our MPNs.

Because of you, all of us could  able to follow the progress of Jakafi, the first approved myelofibrosis drug,  from clinical trial to everyday use.  You made it possible for us all to see the proof, to hear the challenges, and share the outcomes.

Because of you, new patients worldwide now access an invaluable resource, the MPNforum public database of patient-recommended hematologists, a rare resource.  And come together in the friendly atmosphere of our private MPNforum Facebook page.

And, most importantly, because of you and your participation and support, we’ve come to see each other face to face – often for the first time —  hear each other’s stories, attend conferences together, peek into scientific labs.  You helped us all get off the couch and start exercising despite fatigue, explore nutrition and alternative medicine. 

 You’ve made an impact! 120,000 visits to the pages of your magazine from MPN patients, caregivers and healthcare providers in 70 nations.

You can look back with pride at your participation. Now the battle against myeloproliferative neoplasms is heating up.  New drug targets pop up. Masses of genetic data accumulate.  New meds are in clinical trial.  It’s a fast moving environment and we need your help to report and analyze events.

What can you do now?

We’re out of funds, of course, running on fumes and credit cards, as usual,  and need financing to go the next steps.

Fundraising for the 2013 budget will start next month. But right now we need to replace equipment and cover out of pocket expenses from here to the end of the year. This is a supplemental budget.

The most critical area is computers. We came close to not publishing last month following two bluescreen crashes of our basic laptop. Our equipment is a seven year old Toshiba laptop and an even older Dell, both XP.  We replaced two hard-drives in the past year, keyboards and monitors. Software needs to be upgraded. Our scanner and color proof printer both quit months ago.

Financial donations are the quickest, easiest way for us to fix the problem. Equipment donations would definitely help – specially recent vintage PCs or PC-compatible Apples,  a color printer and scanner.

And we need your time.

Well over 100 of us – all volunteers —  have had a hand in writing, editing, overseeing, commenting on stories.  (Some, like Mary Morochnick and Ellen Jacquart took on basic responsibility for two of our most popular pages…the MPNclinic and the List of Hematologists.)

But there is a pressing need for much more participation in administration and production where we are seriously short-handed.   If you can participate in article selection, design, layout  and production, publicity,editing, and web design and programming (WordPress)… come in out of the cold.

The best way is to commit a specific  block of time, say Tuesdays between 8 and 9 PM so we can reliably schedule work.

To contribute time or equipment, send an e—mail to me, zhenyasenyak@gmail.com, and let me know what you have in mind.

To contribute money, you can transfer funds via credit card or Paypal by hitting the Donate button, below.  You can also mail your check to MPNforum, PO Box 17142, Asheville, NC28816

MPNforum is definitely not for profit but we are not yet a 501 (3)(c) corporation so your donation is not tax-deductible.

Thank you for all your support,

Zhen

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: