Alamedans! You may have heard of JM (juvenile myositis) and Cure JM Foundation. Perhaps you donated or shopped at the huge community yard sale that was held on Bay Street in 2008, or attended a Pip Squeak A Go Go dance party held at Rhythmix, or own one of the many wonderful Alameda businesses that donated goods and services to these fundraising events. You may have voted for Cure JM when the organization competed in the Pepsi Refresh grant program in 2010 (and, incidentally, WON a $250,000 grant!). And it’s even possible that I have asked you directly for a donation to this wonderful foundation, which funds research, raises awareness and provides critical support to families affected by this disease.
Now, Cure JM Foundation has a real chance to win up to $250,000 from Chase Community Giving, but we need more people voting
Why is Cure JM important to our city? Because, despite the fact that this incredibly rare, incredibly devastating disease affects only three kids out of a million, there are THREE known cases of it right here in our small city of Alameda.
My daughter is one of them. She was diagnosed in 2007, shortly after beginning kindergarten at Franklin Elementary. She had the characteristic rash on her cheeks and knuckles, and suffered escalating muscle pain and weakness. She couldn’t climb stairs or walk more than a block, and her legs frequently buckled under her, causing her to fall.
We learned that JM causes the immune system to over-activate and attack the body’s own tissue, starting with skin and muscle. We learned that, untreated, JM would cause muscle weakness so extreme that one can no longer walk, lift one’s head, or swallow, and that it can cause life-threatening complications in other organs. We were told that there are treatments for JM, but no cure. And before long, we learned how very brutal those treatments actually are.
Extremely high dose steroids, taken orally and administered intravenously, are the first line of defense. But there is a price: terrible side effects including obscene weight gain, 'roid rage and aggression. Once, when I asked her about it, my sweet girl replied that the prednisone “makes my brain feel like it wants to explode out of my head and beat someone up.” She was 5 years old.
Chemotherapy is used in conjunction with the steroids. We injected our daughter with methotrexate every week for over two years, and most weeks, she suffered severe, debilitating headache and vomiting that would last two full days.
Many additional drugs are used to either mitigate these horrendous side effects, or further suppress the immune system. And the worst part? They don’t even work for all kids.
This is why we need more research, and a cure. And by simply clicking to vote for Cure JM in the Chase Community Giving program, we can land a $250,000 grant. Cure JM is hovering around 18th place, and a top ten spot is worth $100,000. Please, please take the few seconds to vote, and share the link with your own community - post it on Facebook, tweet it, email it. Voting ends on Sept. 19, so don't delay.
Cure JM is an all-volunteer organization, and nearly 100% of all money raised goes directly to research.
We are on the verge of exciting advances in understanding how this disease works, and we simply need to keep funding flowing.
No child should have to experience what my daughter has endured - and sadly, as horrific as it’s been, it is far, far worse for many kids. JM kids are suffering, and dying.
I dread the day when I learn that another Alameda child - or any child - has been diagnosed with JM, but when that happens, I want that child to have more targeted, more effective, and less brutal treatment options than we have right now.