The Childhood Cancer Blog

Jay Scott: Shutting Down Hope for Kids with Cancer

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Don’t worry – I’m not going to get all political in this blog post, but as you’ve probably heard from some news sources, in addition to the bevy of other issues resulting from the government shutdown, access to childhood cancer clinical trials is on center stage. Ironically, we’ve just come off of the month of September – National Childhood Cancer Awareness Month – where Alex’s Lemonade Stand Foundation  and other childhood cancer charities did all that we could (e.g. our
What if that had been the case for kids like Edie Gilger or Stephanie Lipscomb, who we mentioned in last week’s blog. Little Edie had been diagnosed with stage 4 neuroblastoma and despite an aggressive treatment plan – nothing was working. Edie entered a clinical trial that was testing a drug already being used to treat lung cancer in adults and experienced amazing results. There is no trace of her cancer. 
 
Stephanie Lipscomb was diagnosed with stage 4 glioblastoma, a particularly aggressive form of brain cancer, which recurred shortly after her first round of treatment. Her treatment options after recurrence were extremely limited and so she enrolled as the first patient in a Another one of our childhood cancer heroes, Emily Siddell, was diagnosed with leukemia and was able to take a relatively new therapy (made possible through a clinical trial) that has given her a 90 percent chance of survival. Without it, she would only have a 20 percent chance of being cured.

On a personal note, clinical trials helped to prolong Alex’s life giving us
more precious time with our daughter, allowing her the chance to experience school, friends and all of the wonderful things associated with being a kid (including setting up that first lemonade stand).

You know, we use the word hope a lot here at Alex’s Lemonade Stand Foundation to describe the intangible gift that your support provides to all children with cancer, or families like ours who have lost a child to cancer, that someday – cures for all types of childhood cancer will be found. But by denying access to these clinical trials that researchers have worked so hard on and that children so desperately need, the government isn’t just being shut down – the very concept of hope is.

The research projects funded by ALSF (those without any support from the NIH) are proceeding during the shutdown. We actually have a number of research grants open for application and several others that we’re going to award by the end of 2013. By funding pediatric cancer research projects through ALSF, you're not only helping to fill the incredible gap of funding allocated to childhood cancer research by the federal government (which is only 5% of their entire cancer research budget) you’re also keeping hope alive.

Thank you for your incredible support that allows us to keep the door to hope wide open.