MPN Education Foundation 2023

[hunter5582]

just starting to to work my way through the recordings from the 2023 MPN Education Foundation 2023 conference. Here is the link to all of the recordings.

mpninfo.org/conferences/202...

The presentation by Dr. Jyoti Nangalia on MPN Molecular Biology is informative and fascinating.

youtube.com/watch?v=K5ZXdIw...(Not working as expected?)

[Steve_Essex]

thanks for sharing Hunter - just watched the video you initially shared.. very interesting and to some extent reassuring as to the level of understanding they’re starting to acquire for when the mutations occur, which can be very early in life before detection decades later.

It does raise an interesting point for how often we should be proactively tested for additional mutations rather than waiting for a change in symptoms to potentially trigger a test…

Also be interested to see how they evolve their thinking and tie to prognostic models or decisions when to introduce other types of therapies, even if still asymptomatic or considered low risk based on the gene branching / additional mutations

[hunter5582 in reply to Steve_Essex]

I think that evaluation of genomics will become an integral part of MPN care. Genomic data will allow greater customoziation of care for MPNs and other disorders. We are quite fortunate that the research is moving forward in ways that will benefit us in such significant ways.

[Mirabellegage]

That was really very interesting, particularly about the way that they can date a mutation with full genome sequencing.

It is exciting that advances like this will completely change the face of healthcare in the future. It does have all sorts of moral implications but if the treatments develop in parallel then, certainly for me, I believe knowledge is power.

I’d be fascinated to know when my mutation happened. Personally I’m convinced it was in childhood.

Thank you for sharing.

[Barbiebreath]

So interesting! Thank you for sharing Hunter. I wanted to hear the questions!

[Arnoldthecat]

Thanks Hunter. Just finished watching the last videos, very interesting.

[artydutch]

thank you for the link. She is at the hospital I am treated, but I am not sure she sees patients. I am sure I will need a few goes to fully understand 😀

[gjh8733]

excellent talk! Much thanks for sharing Hunter.

[dbus1417]

wow excellent information. What I found most intriguing is how these mutations are likely with us for much longer than we realize.

[Minify]

Wonderful informative presentation. Thank you.

[Roxanne22]

Thank you Hunter that was really informative and generally quite reassuring in some ways - ie that mutations are more common than I thought they may have been. It is so appreciated that you brought this new research to the forum. 🥰

[Bluetop]

Thanks Hunter! Really interesting presentation by Dr Nangalia

[Gaithersburg]

I watched the presentation on MPN molecular biology and it was extremely interesting and positive for our community. Thanks for sharing, Hunter.