Help Us Welcome Volunteer Michelle Swartz To Our Team!
As part of joining Hope For Hypothalamic Hamartomas team of volunteers I was asked to share my story of 'Why' I was driven to join the organization and help others in the Hope For HH Community. 'This is My Why' I was 35 weeks pregnant with a healthy baby boy when my...
This Is My Why | Lisa Soeby
As we continue through International Hypothalamic Hamartoma Awareness month we are sharing the 'Why' of the Hope For HH board members. They were asked to share their reasons for being part of this organization and for generously volunteering their time and expertise...
This is My Why | Kathy Jensen
During our annual board training, each board member was asked to describe their 'Why'. Why do you support Hope For HH? Why do you volunteer your time? Why is Hope For HH important to you and your family? Why do you feel it is important to be an active member of the...
Meet Lou
Meet Lou - A Story of Hope Lou’s story, like many others on this site, begins with a series of misdiagnoses. When he was an infant he was making an odd sound — a repetitive ‘ho-ho’ that wasn’t very laughter-like. Our baby would make noises every 15 minutes, waking...
This Is My Why | Kimberly Ranson
Our team recently participated in board training and a mid-year strategic planning session. Due to COVID-19, both of these sessions were held virtually rather than in person as we had hoped. Like most organizations, our small nonprofit is feeling the impact of this...
A Story of Kindness | Sierra
My name is Sierra Crislip. I’m an hypothalamic hamartoma (HH) survivor. Although my HH was removed at an early age, it left me with an invisible disability. I have struggled since then with high social anxiety and a learning disability. I also experienced bullying...
Hypothalamic Hamartomas – Top Cognitive Issues
HH Comorbidity Survey - Initial Results Neurological issues associated with hypothalamic hamartomas have been well studied in the last 10 plus years. However, when it comes to the cognitive challenges experienced by individuals with HH, the number of studies is...
Diagnostic Tools – Path to Proper Diagnosis of Hypothalamic Hamartoma
There are many tools a physician can use to diagnose a patient with epilepsy. With all these options, you would think it would be easy to find the answers they are looking for. Let me fill you in on a little secret about diagnostic testing. Testing is often used to...
Hypothalamic Hamartomas – Surgical Treatment Spectrum
HH Comorbidity Survey – Initial Results In today’s blog on the initial HH Comorbidity Survey results, we are going to share the surgical treatment spectrum as reported by survey participants. This information was shared by individuals with HH or caregivers of...
Finding Me – CJ Soeby
We are so excited to have CJ Soeby as today's guest blogger! CJ is truly an amazing young man who's story past and present continues to inspire all who have had the honor of meeting him. CJ's love of life, family, and helping others is ingrained in his soul. Thank you...
Hypothalamic Hamartomas – Top Endocrine Conditions and Symptoms
HH Comorbidity Survey - Initial Results Today we continue our blog series discussing the initial results of the HH Comorbidity Survey on HH comorbidities, or co-existing conditions. We believe these symptoms and conditions may be un-diagnosed or under-diagnosed as a...
Hypothalamic Hamartomas – Psychiatric Behaviors, Conditions, and Personality Characteristics
HH Comorbidity Survey - Initial Results 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...
Meet Madeleine
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...
Welcome Volunteer Cindy Rubash To Our Team!
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...
Stories of Hope
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....
COVID-19 and Rare Disease: One Family’s experience
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...
Jojo’s Great Life
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...
Welcome Volunteer Whitney Barnett To Our Team!
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...
Sleep Awareness Week
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...
Rare Diseases and Employment Challenges
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...