Stephanie Pearl-McPhee and her fellow knitters hit the $50,000 mark and then blew right past it this afternoon in her multi-day bikeathon for AIDS patients. I can’t tell you how good that feels.
I can only wish. Today we found out that our daughter Sam is participating in a lupus walkathon fundraiser, with all funds raised going directly to research in the disease she and I have and with no administrative cut-outs.
There has been so little achieved for so long, in part because the FDA’s guidelines pretty much ruled out okaying a drug for a condition where a remission could occur of its own–so nobody tried. Some frustrated researchers with an interest in making a difference finally asked, If we can knock out one marker at a time, would that pass?
And so Benlysta got approved last year, the first new drug for us since corticosteroids (which don’t work for either of us) and Plaquenil (gives me massive hives) in 1955. Benlysta helps one out of eleven patients–a lot, so far, when it does. Sam, having run through everything else out there, is one of those lucky ones.
My daughter was very ill this past year till they gave it a chance. It may well be that she’s alive because of it.
Patients and their loved ones are the ones who have funded the research. Congress, not so much. There are more drugs in the pipeline working their way towards approval, patients helping patients find hope and researchers a cause to dedicate themselves to.
I know I just paid for plane tickets to last week’s wedding. But some things are just so good and so right, somehow we will do this.