Myelofibrosis

[USSpurdy]

I have been considering willing my body to science. Does anyone know if the medical community is doing any research on MF?

[socrates_8]

Hey there USSpurdy...

Some might believe that such a thought is a tad negative, however, I am with you on this...

In Australia universities use to pay a small amount for such dedications to science and learning. Not sure if anyone there is actually studying MPNs, and Myelofibrosis in particular. Here in the land of Oz... Not very much was/is going on in that area of study either, and this was part of the reason that I have since started a MPN Fundraiser to create Research Projects specifically into MPNs, their treatments, and hopefully their cure...?

I recently launched the First Australian MPN Patient's FORUM - MATEs,

mpn-mate.com/forum/viewforu...

...and the Fundraiser involves me cycling 20,000kms in Under 200 Days around Australia to raise the funds for that much-needed research. I also have Myelofibrosis, and I am hoping that this effort will also eventually help to create much greater awareness of Myeloproliferative Neoplasms, and hopefully that will translate into more MPN specialists to aid the afflicted etc...

Best wishes

Steven

(Sydney)

[Meatloaf9 in reply to socrates_8]

Thank you for what you are doing in the fight against MPN's, it's great. I think it is amazing that you can cycle for possibly 200 days and that far. I assume that you are bicycling and not motorcycling (attempted joke). Good luck on your trip and fundraiser.

[socrates_8 in reply to Meatloaf9]

Cheers Meatloaf and thank you ...

Yes, I am the only motor on this trip...

Steven

[daibare72]

Good Morning USSpurdy...I'm not quite sure if I've missed any information along the way as I only dive into this group occasionally! Would you mind telling me which country or continent you live in/on. I live in Wisconsin USA and was diagnosed with MF a little over 5 years ago at age 60. I was able to volunteer for donating blood samples to a tissue bank but I am not aware if the various research communities look for body donations. The hospital that I visit regularly is a research and academic institution; I could make an inquiry for you, but that would only represent the practices here in the USA.

[USSpurdy in reply to daibare72]

Thanks for your reply.

I live in a small city in NW Ok. If you could make that inquiry for me I would greatly appreciate it. I am 86 years old and was diagnosed with with MF in 10/17. I hope my inquiry didn’t sound depressing as I have a very positive attitude about everything.

I was in a wait and see hold until recently, when my doc decided tout me on Jakafi. I tried it for 3 weeks and my platelets went so low that he had me stop.

Regards