Tag Archives: rare disease

The Fault in Our Systems

Posted on July 29, 2014 by Team Captain

by Nathan Traller, Nathalie’s father Editor’s Note: Nathan’s daughter was diagnosed with Aveolar Soft Part Sarcoma (ASPS) two years ago and he has been fighting to get her into a possible life saving clinical trial for PD1 and PDL1. Time … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged 2.0 clinical Trials, ASCO, ASPS, Aveolar Soft Part Sarcoma, Bristol-Myers Squibb, Clinical Trials, Compassionate use, FDA, Genentech Inc., genomic profile, Lung MAP trial, Merck, metastatic cancer, Nathan Traller, National Cancer Institute, National Institutes of Health, NCI, NIH, PD1, PDL1, pediatric trials, rare disease, tumor bank | 3 Comments

A Home Away From Home

Posted on May 21, 2014 by Team Captain

Meet Suzanne Corey Gwynn. She’s going to build a house in Seattle, Washington. It’s not going to be a small little house, but a big house. Suzanne is not an architect with a blueprint or even a carpenter with a hammer. … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged Crescent Cove, George Mark Children’s House, hospice, hospice care facility, Joe Baber, palliative care, rare disease, Ryan House, Seattle, Suzanne Gwynn | 12 Comments