training updates at www.mamajog.blogspot.com
We are mamas running for a cure for JM, a terrible and rare autoimmune disease that afflicts Suzy's daughter, Mielle. Many of us are new to running, and some of us have already run marathons. But for all of us, the experience of running for Mielle has been profound.
We want to inspire you to help us with a donation, join us in running, or start running for your own cause!
Many of you know Mielle's story (if not, see below or watch this video). Thankfully, she is doing well right now. While she is still on powerful meds, you wouldn't be able to tell that there is anything wrong. But we can never forget... not least of all, because we keep learning about more and more new cases - here in the bay area (and specifically in Alameda) as well as across the country. Every time I hear of another case, it hits me like a punch in the stomach... because I have a sense of what is in store for those families. I won't lie; sometimes it all just seems so... bottomless. Yet we have to keep moving forward, even if it's one teeny tiny little step at a time. So I keep running.
On June 5, I will run my fifth half marathon since beginning about 1.5 years ago. It will mean so much to feel your support.
Cure JM is a fantastic organization that has already been instrumental in funding major research initiatives; your donation will be handled wisely and effectively. (www.curejm.org).
If you prefer to donate by check, please mail it to Cure JM Foundation, 836 Lynwood Drive, Encinitas, CA 92024.
As always, thank you!
Here is Mielle's story:
About two and a half years ago, my smart, funny and wise daughter Mielle was diagnosed with Juvenile Myositis (JM). It turned our lives upside down.
There are therapies for this disease, but they involve years of treatment with heavy duty drugs that come with major, horrible side effects. Mielle has endured terrible headaches and nausea from her methotrexate shot once per week; high-dose oral and intravenous steroids caused her to gain 25 pounds (from 37 pounds to 62) in a matter of a few months, and also caused wild (really really bad) rages and mood swings. Regular blood draws, intravenous drug treatments, and trips to a specialist in Chicago have become a part of life.
We are so grateful that treatment exists, and we are holding our breath as Mielle is doing well right now... but there is still no cure. The best we can hope for is remission, and even *if* we get there (many children never do), there are no guarantees for the future. This disease can come raging back, even years later.
I began running about a year into this experience as a way to cope, and fund research into better treatment, and ultimately a CURE for this awful disease. I can't take away Mielle's pain, or endure all those needles and terrible medications on her behalf... but I can run. I'm running for my baby, to show her my love and support and admiration, to raise money, and to ensure a better future for her - and for the other 5,000 JM kids in the US.
Profound thanks to all the wonderful women that have joined for different races: Kirsten, Claudia, Stephanie, Nicole, Anna, Debamitra, Jan, Barb, Amy, Jennifer, and Jen! For many of us, we've had our first times running, first ever half marathons, and a completely transformational experience.
Once again, thank you.
training updates at www.mamajog.blogspot.com