Heart of a Volunteer “The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis My Daughter Elleanor was diagnosed with HH (hypothalamic hamartoma) when she was 2 (2014) after previously being diagnosed with reflux. She underwent…
Meet Elleanor On June 11, 2012, we welcomed our first child, Elleanor, to the world. She was healthy and we were able to take her home and try our hand at this parenting thing. She was growing normally, but would make this weird grunting sound. At two months old I showed her pediatrician a video…
Monday, June 25th, U.S. Food & Drug Administration (FDA) approved EPIDIOLEX®(cannabidiol) oral solution for the treatment of seizures associated with two severe epilepsy syndromes known as Lennox-Gastaut syndrome and Dravet syndrome in patients two years of age or older. For those living with intractable seizures caused by Lennox-Gastaut syndrome and Dravet syndrome, EPIDIOLEX represents a…
The Fourth of July is always such a fun day of celebration in the US. It represents so much for our country and the sacrifices that were made for a chance at a new life. It is celebrated with barbeques, family gatherings and fireworks! Independence can have a very different meaning for many families touched…
HH is for life. In 1957 my wife was born, it was a normal birth but within weeks it was clear all was not right with Little Elizabeth. Doctors in those days had no idea how to diagnose complicated conditions in babies. As Elizabeth grew Epilepsy was confirmed but no treatments made any difference and…
Heart of a Volunteer “The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis My goal in volunteering for Hope for HH is very personal. My son Christopher was officially diagnosed with HH (hypothalamic hamartoma) at…
Launched New Content | Treatment Facilities Hope for HH has recently updated our treatment facilities page here for the United States. HH (hypothalamic hamartoma) is a rare brain tumor and is best treated at an epilepsy specialty center. For patients newly diagnosed with HH or those living with and managing this condition, we encourage you to seek…
Report Finds Epilepsy Remains Widespread The Division of Population Health of the Centers for Disease Control released a study titled “National & State Estimates of the Numbers of Adults and Children with Active Epilepsy – United States, 2015” which provides national and for the first time, state-specific estimates of epilepsy. The data show the…
Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound revealed that Carson had a very large cyst in his brain. Further follow up suggested that it was coming from the hypothalamus region. We delivered normally at 39 weeks, further testing couldn’t confirm anything else, so it was decided…
SUDEP Awareness Series | Part 3 – SUDEP Research In Part 3 in our SUDEP blog series – SUDEP Research, we’ll provide details on the current research being done to find answers regarding the possible causes for SUDEP. Unfortunately, the causes of SUDEP are poorly understood, but many areas are currently being studied. Research into…