CREATING MORE MPN AWARENESS ~ Miller St Markets North Sydney today...

[MPN-MATE Admin]

Hey guys...

Been out beating those MPN Awareness drums today...

Held a small Awareness stand today at Miller Street Markets in North Sydney. It was great to have spoken with so many people who were genuinely interested in what I am trying to achieve in creating Awareness & better outcomes for people suffering with an MPN etc...

Tomorrow, I will have another Awareness Stand out under the Blue Mountains at Windsor... If you are out and about please do drop by & say hello...

Very best wishes

Steve

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[MPN-MATE Admin]

More...MPN Awareness again today & this time out front of Zazu Cafe during Windsor's Sunday Markets thanks to John & Colleen for hosting us... Thanks so much guys your support really means so much to our work...

Part of my beautiful family also dropped by for a delicious Zazu luncheon, & of course to pay me a quick surprise visit...
Love you guys... xo

[KatieB]

Hope it all went well Steve. Lovely to see a photo of your family,

Cheers
Katie

[MPN-MATE Admin]

Hi Katie...

Thanks Katie... Every person that I speak with is another person who has now been able to understand what MPNs are and how they require a great deal more support from our Australian community. Both markets over the past week end saw the support of some Wristband sales, (which all helps), but more importantly it's an opportunity to spread MPN Awareness out there...

And yes, it was lovely to see both my son-in-law, and my two gorgeous grandchildren stop by for a visit, (they are growing so fast), and join me for a lunch

So an awesome day all round Katie...

Hope all's well with you, and that we might see you shortly at the next Cafe Catchup... (?)

Best wishes

Steve

[MPN-MATE Admin]

Hey everyone...

Latest Parramatta River Cat Jetty Awareness Stand...

My second Sunday of creating more MPN, rare blood cancer AWARENESS within the broader Australian community...

Hopefully, all of these long days handing out Brochures and explaining what MPNs are, is assisting in some small way to help people understand what these debilitating, chronic forms of rare blood cancers are, and why we need more Research to be undertaken in the Australian experience...

I also believe that there is a case for more discussions concerning mental health for MPN patients too...

Personally, I suffer depression, and some days it is much worse than others...

Best wishes all for a happy & healthy 2020

Steve

[KatieB]

Hey Steve,

You seem to be doing s great job in making the public aware of the existence of NPN’s. It does take time of course as most people have never heard of them.... including doctors!
I do think we need to be more aware of depression too and am sorry to hear you struggle yourself sometimes. In spite of this, you are always happy to share your knowledge and to look at new ways of achieving your goals.
I do think we all get depressed at times as our bodies take such s kicking with both our particular type of NPN and our toxic medications. Your forum definitely helps where we can talk to like-minded people.

Very best wishes for 2020 to you and all our NPN ers.

Kate

[MPN-MATE Admin]

Hey Katie...

Afternoon... Sorry I am yet to reply to your email, as we still have some long-lost family visiting.. My eldest sister who has finally returned from the USA to see our mother after 47 years...! It has been a fun catchup for all of us really...

Yes, I do believe that mental health is a real issue and very much a part of the wardrobe of having an MPN, at least in my view...

Last evening for me was particularly eventful. Without going into all the details, sometimes my condition's symptoms make my life far more challenging. Annoyingly, I had to cancel today's early morning ride because of those complications etc..

Anyways, I am fine, I just struggle around the edges, from time to time is all...

Thank you all for your email response too Katie. Naturally, I am grateful for all your considerations and thoughts.

I will respond to your email reply more fully, asap... Just as soon as I have been able to enjoy some much-needed respite...

Talk more soon...

Steve
ox

[Lady in Red 01]

Hi Steve,
I know I have been absent for a long time with issues far too many to mention here.
Now my husband is recovering from his Tripple Heart Bypass, life is slowly getting better.
As you are aware much has taken place in my world.
It is so good to catch up with Mates and so nice to see you at various events beating the Drum of MPN awareness.
Nice picture of your family and I see your grandson is very much like you ..

You are clearly making headway with the awareness of our MPN status.
You certainly deserve to achieve all that you hope for in bringing this Disease of ours, much more recognition throughout the Globe.
I am now ET Jak2 Positive, MF, AXSL1, and I now have PV diagnosed by Professor Harrison late November, that was a surprise!

Confident of starting Ruxolitinib sometime in early February, that will be interesting.
I assume they will titrate one Drug for the other?
At least I will be off HU some 18 months after starting it..
Belated Happy New Year to All the Members
So nice to see the group is growing .
Take Care & My Best Wishes as Always to All...
Maria.