When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World. In the world of Opsoclonus Myoclonus Syndrome (OMS), few names are as respected and recognized as Dr. Michael R. Pranzatelli. His work changed the trajectory of care for children like my son, H. He devoted his life to researching OMS and founded… Continue reading When the Protocol Doesn’t Work
Tag: rare disease awareness
8 Years Ago: The Beginning of Change
8 Years Ago: The Beginning of Change A Journey of Faith, Fear, and Finding God in the Chaos 8 Years Ago Our Lives Changed, our world shifted in a way we never saw coming. Our youngest son had just turned three, and life felt beautifully ordinary—summer evenings at the ballfield, laughter echoing through the house,… Continue reading 8 Years Ago: The Beginning of Change
New Video from NORD
New Video from NORD Here is a brand New Video from NORD. For those who have no clue what NORD is...it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By "run of the mill," I mean those diagnosed frequently. Awareness This site is all of the hardcore, rare,… Continue reading New Video from NORD