International MPN News, Science & Opinion

forumsphere

Sometimes LIKING just isn’t enough

facebook like dislike

 

I believe passionately in MPNforum and its mission.Zhenya Senyak For me, MPNforum is a personal pathway to immersion in life and service to blood brothers and sisters. Sometimes that mindset can screw up a simple message.

Our Small Donation Program promotion, launched before the weekend, isn’t about your money. You probably figured that out by now.

We don’t need your money as much as we need you. If we’re going to make a difference, if we’re going to make our need for safe clinical trials, fair drug pricing, and get meaningful help in facing the medical, economic and social challenges of myeloproliferative neoplasm, we need the combined voices – and votes — of thousands of us. Together.

MPNforum Magazine doesn’t cost much out of pocket to run for a year and we can usually cover that through small donations. Many of you could easily cover the whole nut with a single check. But we don’t do that. MPNforum is a collective effort and that means ownership by all of us.

In our first post, we asked you to be different. We returned to a Zebra photoZebra Hand Art as a reminder that together we have already proved something. When we come together in our thousands we’re a force to be considered. This year, in response to our petition, the key people at the FDA sat down with the Zebra Coalition to address MPN patient concerns.

I think we need to be more direct about why we actually need you to contribute through the Small Donation Program.  Instead of looking back at achievements, we need to look forward to the work ahead.

MPN drug pricing is out of control. For Medicare patients, co-payments alone are $2000 or more per month. As MPN patients we’re on our own in contesting insurance denials, in influencing clinical trials or basic research, in getting support for the combined challenges we face in securing adequate treatment.

The Forum evolved from a little blog to an international MPN patient service used by tens of thousands of us worldwide. The next step is to combine our patient support activities into an organization with structure and funding to provide real human services to MPN patients — clinical trial advocacy, referrals, legal aid, economic support, travel services to treatment and trials, political lobbying for legislation we need for greater NIH research funding.

In 2015 we can make a beginning by forming a formal non profit action committee.. For this we do need you on board. Your Small Donation Program gift is your vote of confidence, your endorsement of MPNforum and the direction of our growth. It’s what you can do right now when LIKE really isn’t enough.

Here’s the donation page.  https://mpnforum.com/the-difference/

Together we can do it.

Thanks,

Zhenya Senyak

 

 

 

 

Zhenya Senyak

Comments on: "MPN Patient Advocacy … When LIKING isn’t enough" (4)

  1. Susan Telford said:

    Thank you Dave. Just wondering if your doctor has advised you to consider a BMT and you are just choosing Jakifi. Have you MF? If this is too personal ,don’t feel you have to respond. My sister is 64 and her fibrosis is advanced so although the Jakifi is helping the symptoms one doesn’t know if it is changing the progression of the disease.

    • David Dickover said:

      I thought I had answered your post of Oct 9. My lack of techno capability struck again.

      I was diagnosed with MF at age 59. (Coincident with prostate cancer) I was under watchful waiting for MF for a few years. I was being screened for a BMT (UNC) when I suffered a heart attack. Oddly, the placement of a stent greatly improved my health and I decided not to go forward with a BMT.

      All this was under close monitoring by a variety of doctors, all very supportive. I am considering another attempt at a BMT. Basically, Jakafi has helped and I hope for new medication as I do not like the down side to a BMT.

      Keep in touch and hope all goes well for your sister.

      Dave

  2. Dave Dickover said:

    I too considered a BMT. As many have said it is a difficult decision. I have benefited from Jakafi and hope for progress in the way of medication. Good luck and stay strong. Dave

  3. Susan Telford said:

    Just wondering what is available in Canada. My sister is in Toronto and has had MF for 3 years. She has the option of a transplant as I ,her sister am a perfect match. She has been on Jakafi for one year and it has helped immensely with the symptoms but how long will that work.
    One always hopes that there will be something new that can reverse the condition without risking your life in a transplant.
    Any thoughts would be much appreciated.

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: