We know what it’s like to receive this diagnosis. And while we have focused our efforts on finding better treatments and ultimately a cure for your child, we have friends who want to help you in this journey.
If your are newly diagnosed and have questions, please visit with our friends at the PBTF. They offer a Starfolio, a free toolkit that helps organize medical information with your healthcare team. It includes tools to keep track of treatments, medications, patient education materials, information sheets and scans, including FAQs and questions to ask your doctor. Please contact their family team at 800-253-6530, x306, or via email.
If you are looking to understand the treatment process, this resource explains it well.
If you are looking for the latest clinical trials in the U.S. and beyond, visit the National Institues of Health listing.
If you are looking for financial assistance, here are some additional resources:
While we are diligently working to find the funds that create the cure, we can offer one small token of comfort. Inspired by Kyrie’s “That,” a beloved handmade blanket that went everywhere with her, we have an amazing volunteer who creates blankets embroidered with your child’s name and designed with his or her preferences in mind. Please contact us via our Facebook page or at