Platelet Research Program

There is no cure for ITP.  Although more is known about the disease each year, there are many unanswered questions. 

The Platelet Disorder Support Association has established a research fund to help find a cure for ITP and learn more about platelet disorders.  A committee of lay and medical representatives will choose the projects we will fund and monitor their progress.   We will keep you up-to-date in The Platelet News and our e-messages.

You can contribute to our research fund on-line or send a check or credit card number to Research Fund, P.O Box 61533, Potomac, MD 20859.  You can also join our "Fight Platelet Disorders" race/walk pledge program.  All contributions to our research fund are tax deductible.

Research Fund Donation: $25.00 increments - Donate Now

Help ITP Research – A Father’s Appeal

I suspect that my story is all too familiar to many of you. The first time we heard about ITP was when our child was diagnosed with it. Then, we rode the roller coaster between hope and despair, only to find out that we were on the "wrong" side of the statistics. Our child was chronic.

And so, we struggled to come to terms with this mysterious illness. We began timing our lives around blood tests and treatments. We cried. We hoped. We coped. We learned a few important things about life, and in some small ways, our lives even became better than they had been before ITP.

There are days, though, or at least moments in days, when I look at my child and I wonder how long it will be before her current treatment regimen won't work anymore. On those days, I wonder what the long term physical and psychological effects of this illness will be. I wonder how she will get adequate health insurance as an adult, and what the quality of her life will be next year, and twenty years from now.

Sure, there are some things that we can and are doing in terms of diet, exercise, and attitude. Sure, they help. Sure, ITP is survivable.

But it seems quite clear to me that more, and better, treatments need to be developed. This won't fall out of the sky. Our disease is too rare to interest the big drug companies or to attract foundation funding, except at the margins. The NIH acts at a snail's pace. And so we sit, and wait.

I'm sick of waiting, and we don't have to wait anymore unless we choose to do so. The point is, it’s a choice. Joan Young, and others working with her, started PDSA from nothing. There are now several thousand members. Enough of us are organized to make a real difference. We don't have to develop a new drug to move the ball forward. There are any number of drugs already FDA approved for other diseases, and possibly other treatments, that could help ITP patients, but must be subjected to clinical trials first. It takes money, but not a fortune. We are talking about thousands of dollars here, not hundreds of thousands.

There are no guarantees, and research takes time, but every process has to have a beginning. Let those of us – we several thousand PDSA members - who have the most at stake make a beginning here. The PDSA Board is putting together a research initiative that relies on us. As little as $10 from each member can get this thing up and running, but we must spread the pain and maximize the effect by each pitching in.

I am sending in $500 for this initiative. For me, this sum is a lot of money. But it represents something – the decision to do what I can to exert even a little control over what happens in the future. Join me. Fund this initiative. There are enough of us to raise enough money, if we have the will to do it together.

~ From a Father