I am a mama running for a cure for JM (Juvenile Myositis), a terrible and rare autoimmune disease that afflicts my daughter, Mielle.
October 14 Update: I did it! I ran a FULL marathon! Click on the Flikr images just below the video on the right to see images from the race!
If you aren't familiar with Mielle's story, watch this 3-minute video. It was made a couple of years ago, but will pretty much get you up to speed.
This Halloween will be the 5-year anniversary of Mielle's diagnosis of juvenile dermatomyositis. She's been dealing with it nearly half her life.
In spring of 2011, Mielle had been doing so well that we hoped she would soon be medication-free. And then the disease flared. Luckily, her doctors caught it very early and we were able to stop it by increasing her meds - and luckily we did not have to re-introduce the drugs that cause the most brutal side effects. For all of this, we are so grateful.
But this means at least two more years of meds, if there are no more flares.
You know what? Enough already. I'm so weary of the suffering... Mielle's and all the other JM kids. Knowing what they go through will break your heart.
So I'm back on the fundraising train. Because if we don't do it, nobody will.
And this time I'm upping the ante.
I started running from scratch in September 2008, about one year after the diagnosis. I never EVER in a gazillion years thought I would run. Ever. But in the last 4 years, I have run 11 half marathons and I will run number 12 in November, in Monterey.
I've often been asked whether I would ever run a full marathon. I never really felt all that compelled to, but I when ready this amazing piece by my fellow JM mom and soul sistah, Erika, I couldn't stand by. She put into words so much of how I feel about running. And a little voice finally started to whisper, "full marathon... full marathon." So, YES, I've decided to go for it at the Baltimore Running Festival, where Cure JM is holding their incredible educational conference in October. I figure, what better place to try for a full marathon than at a Cure JM event, where I'll be surrounded by many of the children who inspired me to run in the first place, cheering me on?
And I know I've asked many, many times already, but I have to ask again... because we don't yet have a cure. We don't yet have treatments that don't also include horrible, complication-causing side effects. But every penny we raise helps us get closer. Please, please donate if you can.
Cure JM (www.curejm.org) is a fantastic organization, providing information and support that truly changed the course of events for my daughter, as well as countless other JM kids. It funds major research initiatives for juvenile myositis, and since it is a completely volunteer organization, nearly 100% of all money raised goes directly to research. Your donation will be handled wisely and effectively.
Please give to this most worthy cause if you can. Also: healing energy and prayers for my family, and for all JM families, and for all families of sick kids are most welcome.
Let's end on a high note. Here is a recent video of Mielle... take that, JM!
training updates at www.mamajog.blogspot.com
JM is a rare autoimmune disease in which the body's immune system attacks its own cells and tissues. For many children with JM, it's a challenge to simply stand up or sit down and can be life-threatening. This rare disease affects approximately 2-4 children out of a million.
The Foundation’s aspirational goal is to never, ever let another child suffer with Juvenile Myositis. With your help, this goal may be well within reach some day.