Meet Carson

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,...

read more

SUDEP Awareness Series | What is SUDEP?

  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...

read more

Meet Glen

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...

read more

Arizona Gives Day

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...

read more

Welcome Volunteer Lauren Mellon to our team!

“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...

read more

Brain Injury and Cognitive Function

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...

read more

Welcome Volunteer Angela Donn to our team!

“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...

read more

Meet Kaitlyn

Kaitlyn's HH Journey We brought our perfect beautiful daughter home two days after she was born.  Soon we realized that we had a fussy baby who wouldn’t sleep unless we held her and was sometimes inconsolable.  When I took Kaitlyn to the pediatrician for her two-week...

read more

Launched New Content | News, Research & Resources

  News, Research & Resources recently launched new content on the Hopeforhh.org! If you haven’t visited the Hope for HH website recently, we encourage you to check out the newly updated and reorganized section on News, Research and Resources. You will find the...

read more

A Sister’s Story

A Sister's Story by Annie Kane My name is Annie Kane, I’m 14 and I have two crazy siblings: my brother Charlie and my sister Gigi. Now, why would you refer to your siblings as crazy, Annie? Well, let me start by saying that from my own experience crazy does not mean...

read more

Meet Mason

Mason's Story It was a Tuesday, September 22nd 2015.  Mason was about 19 months old and we had run into the grocery store to pick up a few items.  He was babbling away, sitting right in front of me.  Next thing I knew he was no longer babbling, no longer clapping, no...

read more

Endocrine Dysfunction – What does it mean?

  Endocrine Dysfunction For most patients and families – the thought of HH surgery brings up lots of questions and concerns. Sometimes we aren’t sure what to ask our surgeon regarding all possible complications. With so much focus on seizure control, the discussion of...

read more

Look Who’s Coming to the DC Family Forum

It's less than 2 weeks away. It includes guests from as far as London, California, and Canada.  New nationally recognized medical experts will be speaking on cognition, memory, behavior and more. A Hope for HH research grantee will be sharing her preliminary findings...

read more

SUBSCRIBE TO BLOG VIA EMAIL

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 69 other subscribers

CATEGORIES