Victoria Louise Lamp passed away unexpectedly of November 25, 2017 due to complications of SUDEP (Sudden Unexpected Death due to Epilepsy). Victoria had 2 surgeries to remove her hypothalamic hamartoma, however she continued to seizures at night. Victoria graduated from Ferris High School in 2004, and received her Bachelor of Arts (Cultural Studies) from…
SUDEP Awareness Series | Part 2 – Talking about SUDEP with your doctors In Part 2 in our SUDEP blog series – Talking about SUDEP with your doctors, we’ll provide information and guidance on how to begin the SUDEP conversation with your doctors. What Is SUDEP? SUDEP is the sudden, unexpected death of someone…
SUDEP Awareness Series | Part 1 – What is SUDEP? Hope for HH has been made aware of two young adults with HH that recently passed away. Both cases are suspected of being related to SUDEP (Sudden Unexpected Death in Epilepsy). For most HH families – SUDEP is an unfamiliar term that really should…
I am Glen B Schallman , 59 yrs old was diagnosed back on March 1, 2002, by Dr. Rekate at the age of 43 with a 2.5 cm Hypothalamic Hamartoma, and 2 other very rare brain conditions (Unilateral Polymicrogyria and Unilateral Schizenchephaly). About 2 months after being diagnosed, I decided since I could not work…
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 Hello, my name is Diane West. I live in Clovis, CA. I retired from my position as a systems and statistical analyst…
What will you be doing April 3rd? For those of you living in Arizona (and elsewhere) – there is an incredible opportunity to support the work being done by Hope for HH! Tuesday, April 3rd is Arizona Gives Day and is a statewide, 24-hour, online giving campaign takes place in early April each year. Arizona Gives…
Hope for HH participates in key epilepsy wide initiatives including the Rare Epilepsy Network (REN) – a network of 29 rare conditions that all share seizures as a common side effect. The REN is collecting patient data about these conditions and leading critical research toward improving side effect management and care. We know there are…
The 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 son, Jack, was diagnosed at 15 months after a year of misdiagnosis. He underwent laser ablation surgery just before his…
Brain Injury and Cognitive Function March is Brain Injury Month and for many individuals with HH – the challenges of HH and those associated with a brain injury can be very similar. Fortunately, therapies designed to help individuals with a brain injury regain cognitive function can also be very beneficial to individuals with HH. “Brain…
The 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 son, Eli, was diagnosed at age 3.5 with Hypothalamic Hamartoma. While trying to navigate all that goes with HH I…