Help us find the CURE!
About Friends of ET Research
About Friends of ET Research
How our journey began...
How our journey began...
Our personal journey began when our daughter was diagnosed with Essential Thrombocythemia, (ET), following a mini-stroke at the age of 16, in 1997. This is a very rare form of blood cancer that causes the bone marrow to overproduce elements of the blood cells. The body is incapable of keeping the blood in balance. In her case, her bone marrow makes way too many platelets. Platelets are important because they cause the blood to clot when we are injured or cut, for example. But when there are too many in the circulating blood, clots may form spontaneously.
ET is in a class of diseases known as Myelo-Proliferative Neoplasms, (MPNs). These are rare, chronic, and life threatening (if left untreated) blood malignancies that currently have no cure and limited treatment options. Because MPNs are so rare, the scientific community has paid little attention to them.
Our personal journey began when our daughter was diagnosed with Essential Thrombocythemia, (ET), following a mini-stroke at the age of 16, in 1997. This is a very rare form of blood cancer that causes the bone marrow to overproduce elements of the blood cells. The body is incapable of keeping the blood in balance. In her case, her bone marrow makes way too many platelets. Platelets are important because they cause the blood to clot when we are injured or cut, for example. But when there are too many in the circulating blood, clots may form spontaneously.
ET is in a class of diseases known as Myelo-Proliferative Neoplasms, (MPNs). These are rare, chronic, and life threatening (if left untreated) blood malignancies that currently have no cure and limited treatment options. Because MPNs are so rare, the scientific community has paid little attention to them.
Friends of ET Research was formed in 1999 by a large group of dedicated volunteers (our very close friends) whose sole mission was to bring hope to people who suffer from Essential Thrombocythemia (ET.) Our objective is to raise as much money as possible to continue much needed research currently underway. We are a 501 (c) 3 non-profit organization recognized by the IRS. That means your donations are 100% tax deductible.
From the year 2000 through December, 2023, we have raised nearly $872,322. The majority of this money was raised through an annual tri-state golf tournament held in 2000-2006 (photos above.)
The late football pro Johnny Unitas, and NBA pro Alan Houston were featured guests as were Samantha Brown of the Travel Channel and PBS, and O.J. Anderson of the New York Giants.
Today, we raise funds through special campaigns. At this time, 100% of funds raised go directly to research. There are no administrative costs, no overhead, no paid employees, etc.
From the beginning, we have collaborated directly with the MPN Research Foundation in Chicago, IL. The MPN Research Foundation is the largest fundraiser and grant maker for research on these diseases. We couldn’t have accomplished as much as we have without partnering with them. Our daughter sits on their board. You can learn more about current research initiatives by clicking on their link.
