I have learned a lot about MPNs. Most notably Essential Thrombocythemia by following this organization on social media. More specifically on Face Book. I have improved my knowledge which has been invaluable. As an orphan disease ET and other MPNs need advocates that raise awareness as well as money. These friends do a lot and I am happy to recommend them.
This Non Profit does great things for this orphan disease of Essential Thrombocythemia. As well as for the MPN community in general. Orphan diseases are mostly neglected by the scientific community. Thus, non profits like this that raise money to fund research are imperative.
Because of the dedication of very devoted people whose families have been impacted by this disease, the public is becoming more informed about it. This particular not for profit organization has raised the awareness of how limited the resources are to help find a cure.
I founded this non-profit in 1999 to raise funds for research initiatives after our daughter, then 16, was diagnosed with Essential Thrombocythemia (ET.) Through 2018, we have raised $750,000, all of which has gone to research. Through these donations from our generous donors, the science has increased dramatically, but we still have so much more to learn about these rare bone marrow cancers. Please continue to support our efforts!