On May 14, 2018 at the Champions for Change Gala, The ChadTough Foundation announced the naming of the Chad Carr Pediatric Brain Tumor Center (CC-PBTC) at Michigan Medicine. The center is focused specifically on pediatric brain tumors, which is the leading cause of disease death in children.
Michigan Medicine has since announced the hiring of Alyssa Paul as the CC-PBTC Clinical Subjects Coordinator – a position fully funded by ChadTough. The position was created due to the recent large-scale increase of families dealing with DIPG pursuing clinical trials or second opinions at the University of Michigan.
“In the last two years, each year we’ve seen an incremental jump in the number of patients with DIPG coming to U-M to receive their care,” said pediatric neuro-oncologist Carl Koschmann. “A lot of that has been referrals from patients that otherwise wouldn’t have gotten their care here.”
With more DIPG patients coming to Michigan, staff is becoming increasingly familiar with treating the disease.
“Obviously it’s not something that we’re celebrating — that there’s a lot of DIPG — but these patients need to be cared for somewhere, and I think, increasingly, we feel really good about bringing them here to care for them. We’re providing good comprehensive care and good evidence-based therapies. I think a lot of that — where that all started from — is families being aware of our interest in DIPG research because of the outreach of ChadTough.”
So, with that increase in DIPG patients, a need arose for someone to engage with those families and help them find a method of treatment. Michigan Medicine used ChadTough funding to hire Alyssa, whose primary responsibility is to coordinate clinical research involving pediatric brain tumors being treated at U-M for the next five years.
She is coordinating the clinical care, research, and communication with families of children with DIPG from around the country and world – and by all reports, doing an incredible job.
One mom from San Francisco who is considering traveling to U-M recently commented, “I am so thankful to have connected with Alyssa – she has spent so much time with us on the phone and been incredibly knowledgeable of the treatment options at U-M. At this point, I fully trust her as much as anyone in this process.”
The ChadTough Foundation is celebrating this hire as an incredible step in finding a cure for DIPG because it shows these families and patients are becoming a priority.
“This momentum is incredible,” said ChadTough co-founder Tammi Carr. “We are so thankful for our supporters and so proud of our little boy.”