MPN Blood Cancer Support - organisations & some patients

My name is Wim Louage and I was diagnosed with ET or Essential Thrombocythemia ( having a CALR Type 2 mutation ) during 2015.

We know now that I have my chronic blood cancer for more than 20 years, because an old blood count from 2004 does confirm the disease, somehow Dr's ( even ER in hospital ) never diagnosed me earlier with this rare disease.

My bone marrow fibrosis formation is sitting between a grade 1-2. There is a risk my ET will progress into post-ET Myelofibrosis.

Until today I underwent 2 bone marrow biopsies ( 2015-2021 ), I guess a new BMB is scheduled for 2026-2027 ( or earlier when my blood counts do indicate further progression ).

A stem cell transplant is until today the only ( not always successful ) cure : a SCT is only done when no other medical treatments can keep the disease under control, it is a life saving but very harsh procedure.

I started my immunotherapy ( Interferon injections ) in March 2017, when platelets reached the 1,5 million count. ( almost 4 x the normal max value ).

Lots of research is happening these days, also typical mutation targeting drugs are currently tested in clinical trials.

I started a private patients support group on Facebook during 2016 ( currently 1765 members ) and each year I run a fundraiser for a MPN foundation / charity, or to help even several individual patients worldwide who can not pay their medical bills. Some of them just do not have easy access to the basic medical treatments because they live in a remote area, somewhere in a 3rd world country.

I will use mobile money transfer provider " RIA " to put the gifts on the patients personal bank account.

This year, some MPN organisations will also benefit and I will distribute a part of the collected money to them : thinking about NMPD ( looking for stem cell donors ) etc ...

Every small gift helps !

Thanks.

Wim