We are ready to go—almost. I say “almost” because the pharmaceutical company that was to supply the drug as a clinical trial partner has elected not to participate. I’m not totally surprised by this turn of events. Juvenile myositis is a rare disease, and in the dollars and cents world of big pharma, a market like JM is all too often seen as too small to bother with.
But we’re not giving up, even though this big pharma decision leaves the research team with a $150,000 budget gap that someone must fill.
Cure JM’s Research Committee recommends that we fill this gap and provide this funding— with an initial commitment — to allow the trial to move forward without pharma’s participation.
I am often reminded by our families and patients just how critical it is that we move forward with clinical trials in our efforts to provide better treatments for those affected by this life-altering disease.
I recently spoke with a parent who shared with me that her daughter Olivia, six years old, has been receiving weekly chemotherapy injections for four years. The chemotherapy makes Olivia so sick that she often spends most of the weekend in bed due to nausea. In addition to the anxiety and nausea, doctors now believe that four years of this harsh treatment may be causing liver damage for Olivia. They may soon have to choose between controlling the juvenile myositis with these harsh treatments or protecting her liver. These are the kinds of difficult decisions our families make every day – leaving the JM unchecked is life-threatening, but the treatments can, in many ways, be worse than the JM itself.
I believe we can – and must – do better for our children.
It takes an army of parents, grandparents, friends, and family to make Cure JM’s work possible. We’re grateful for any generosity you can give to help us drive our mission of giving children the improved treatments they need to have the best shot at a brighter future.
Checks can be made out to Cure JM and mailed to Cure JM, P.O. Box 45768, Baltimore, MD 21297, with “Clinical Trial” in the memo.
Thank you kindly for your support and generosity,
