MPN EXTERNALLY-LED PATIENT FOCUSED DRUG DEVELOPMENT MEETING

[MPN-MATE Admin]

Hi Everyone...

There are always new things happening in the world of MPN. One of which I discovered through my networking with the MPN Research Foundation (MPNRF), in the States. They are a rare institution that is continually looking for ways to better aid of those of us individuals afflicted or affected by someone who suffers from a Rare Blood Cancer disorder; patients, their families, friends and their carers...

In this latest effort, MPNRF brought together Twelve MPN Patients to discuss aspects of what it means to have an MPN, and to ask them what they might like to see happen within the space of future MPN Research, and why.

The first YouTube is quite a lengthy one that covers an introduction from Michelle Woehrle, Executive Director of the MPN Research Foundation, and she begins by explaining what this is really all about:

PS. The first 13:39 sec's of this YouTube is just about MPN Sponsors & Partners. Michelle's address begins at 13:40 sec's (just in the event that you might like to skip ahead)



The Second much shorter YouTube, reveals the Voices of many MPN patients with their concerns and aspirations for a better Quality of Life (QoL), and their fears and apprehensions about what it's like to 'Live with an MPN':



The PFDD was hosted by the MPN Research Foundation in collaboration with other advocacy organizations in the MPN space such as MPN Advocacy and Education International, The Leukemia & Lymphoma Society, MPN Cancer Connection, MPN Education Foundation as well as UT Health San Antonio MD Anderson Cancer Center’s Drs. Ruben Mesa and Robyn Scherber.

Hope you will enjoy these insights, as much as I did... The future suggests that there is a lot to remain optimistic about in the wolrd of having and 'Living with an MPN' all...

Best wishes

Steven

[KatieB]

Hey Everyone,

Sat for several hours and listened to this on YouTube yesterday. An amazing insight into how other MPN ers react to various drugs and the symptom burden some of them have to cope with. Everyone reacts differently it would appear, to the same drugs.
We truly are a group on our own as most of us look well but in fact have a serious problem.
The new medications in the pipeline offer hope to those running out of options. There are actually few options left at the moment once you have become immune or suffer from some intolerable side effect. However, the haematologists offer us hope in this video.
One thing I found amazing was the lack of faith in advice given by most doctors. This I am sure is because it is not understood in many quarters due to its rarity.
The ability to think for oneself and make decisions about ones own body was also apparent in the video.
I had the greatest admiration for those stoic souls who remained positive.
A very informative few hours made me realise just how much, I am NOT alone.

Thanks Steve
Kate

[MPN-MATE Admin]

Hey Katie...

You are most welcome of course...

Always lovely to hear from you. BTW I hope that you also managed to touch base with Warwick. When last I spoke with him, Warwick was also telling me how much he also enjoyed learning about the ways other MPNers have had to learn how to cope with so many life-changing events and factors due to being diagnosed with one or more of the MPNs.

I particularly found those Videos illuminating, and especially regarding the amount of people who stated that they have have had issues with the Doctors etc... I agree with your summation also in that this would largely be due to their own lack of knowledge on the subject of MPNs. However, look at the adverse impacts it has had upon many of our MPN peers, who bravely appeared on these Videos.

These are indeed the reasons why we must all continue to be our own best advocates, and apart from staying as fit & healthy as we can... We also all need to stay informed, in my view...

Best wishes Katie ...
Talk mosre soon...

Steve

PS. We have a recently had contact we a few European MPN FORUM sites – So far German & Dutch... Armin Posted a reply on the Curcumin Post recently, and I have just heard from Marji in Belgium too...