In 2019, Hope for HH launched a comprehensive HH Comorbidity Survey. The goal is to better understand the co-existing or comorbid conditions and symptoms that individuals were experiencing along with HH, but perhaps not receiving an official diagnosis for. In this series of blogs, we plan to share some of the initial findings and perhaps…
Madeleine was born on September 5th, 2004. Everything appeared normal until some unusual symptoms at 6 months old. Her diagnosis from Great Ormond Street was quick, she had a Hypothalamic Hamartoma (HH), a rare type of brain tumor. We were constantly watching for seizures, common with this diagnosis, but thankfully they never appeared. On the…
My name is Cindy Rubash and I am a volunteer with Hope for HH. I was asked to explain why I have chosen to be a volunteer (besides the fact that I am retired and have way too much time on my hands). Well, I have a grandson with HH. Our family has a history…
Isolation, Lockdown and Social Distancing have become buzz words we will forever associate with this time of COVID-19. While you don’t have to go far to hear stories that make us fearful – you can also find stories of hope, kindness and connecting – like never before. In today’s blog, we thought it would be…
Having a rare condition like a hypothalamic hamartoma can be very scary. In today’s world, with so much uncertainty around COVID-19, having both at the same time can be downright frightening! However, as time goes by, we are all learning to live with uncertainty and move beyond the fear. For some, this experience has taught…
We are thrilled to be sharing the story of an incredible young man today! His name is Jojo Canariato. His Mom, Stacie, shared their family story with us previously and you can read the latest update here. However, today we get to hear from Jojo himself! He is now 10 years old and in the…
I’m a full-time nurse, wife, and a mother of two children…Reece who’s 10 and Nora, who’s 7. Reece was diagnosed at age 5 after his seemingly innocent spells of laughter began to be followed by bouts of staring, confusion, and sleepiness. After a year of failed treatment with medication, he had a laser ablation at…
Sleep – it seems like we can never get enough of it! We invest in Fitbits and Apple Watches to track it, and millions of dollars are spent on the perfect sleep aids, yet it seems like no matter what we do, we can never get enough. This is even more true for individuals with…
Last January, the Hope for HH community lost an incredible friend. Celia Alison Strong was only 26 when she passed away unexpectedly from SUDEP. SUDEP is defined as “Sudden Unexpected Death in Epilepsy” of a person who is otherwise healthy. Celia loved music, especially musical theater. She performed in the chorus of five CYT shows,…
We are excited to bring you another in our series of blogs by our Intern Afsoon Movahed. Afsoon was able to interview Dana Lockwood, an adult with HH, and share his experiences with seeking job employment. Today’s blog is both a point of view for some and a guide for others, on employment with a…