Walking for life
Thursday August 02nd 2012, 11:22 pm
Filed under: Family,Lupus

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.

8 Comments so far
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May the event be a tremendous success. No administrative cut at all is quite rare. Bravo!!!

Comment by Channon 08.03.12 @ 6:49 am

There are a great many worthy causes out there…but this sounds pretty stellar even among those. Count me in! (I just went over and donated now.)

Comment by RobinH 08.03.12 @ 6:58 am

Well, high time! I think another friend of mine is on Benlysta.

Comment by Don Meyer 08.03.12 @ 8:28 am

Count me in! It’s only a little, but like the knit stitch, it all goes to make a greater total. And I really am impressed that it all goes to research. Go, go Dr. Sam!

Comment by DebbieR 08.03.12 @ 9:14 am

and it seems to me that spending a little less to build airplanes our military doesn’t even want to spend more on medical research would be good government — guess I can dream

Comment by Bev 08.03.12 @ 10:16 am

Done. Good luck to Sam!

Comment by India 08.03.12 @ 11:27 am

Hope the walk is a huge success.

Comment by RobinM 08.03.12 @ 11:27 am

I gave a bit! Now that I have a job again, I’m trying to pay the good luck forward when I can. Good luck!

Besides, my job is as an editor, and I just finished a report on SLE. It’s fate!

Comment by ccr in MA 08.03.12 @ 5:10 pm

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