Could it be HH?

Newly Diagnosed

Going for Treatment

Living with HH

Adults with HH

Hope for Hypothalamic Hamartomas

We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure. 

For Researchers

With continuing research on hypothalamic hamartomas, researchers are gaining a better understanding of the condition and its complex comorbidities.

Learn More

For Professionals

Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.

Learn More

For Donors

Contributions are a critical part of our efforts to provide support to patients and families, as well as to educate medical professionals and therapists.

Learn More

Meet Other Families

Meet Brett

Mark and I married 8 years ago, in our mid-thirties, and wanted nothing more than to be parents.  Our journey to parenthood took the course of unsuccessful infertility treatments, as well as domestic newborn adoption.  Brett was born on Saturday, October 5, 2019, however, we didn’t meet him until 5 days later in the hospital…

Read more

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 himself up and because of this…

Read more

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 seizures, common with this diagnosis, but thankfully they never appeared. On the…

Read more

Meet Chloe

In October 2018, we first noticed Chloe having what we called staring episodes. She would all of sudden have a blank facial expression and not respond to us. These episodes would last for 45 seconds – 1 minute. Afterward, she would seem confused and sometimes tired. We noticed that these would follow these bouts of…

Read more

Meet Max

Our Mr. Max was born on August 25, 2009. Besides a little morning sickness in the beginning, I had a wonderful pregnancy, and his delivery was without any complications. His big brother, Jack, dad, and I could not wait to meet the little man that was going to complete our family. Max was born a…

Read more

Meet Francesco

Appreciate the little moments in life. That’s what my almost three-year-old son has taught me. Francesco was born, full-term and completely healthy boy, on December 27, 2016. He came into a world that loved and cherished him; a support system of three beautiful step siblings, two loving parents, two clever dogs, and extended family and…

Read more

Meet David

If you met David or indeed if you saw David perform you would be surprised to learn that David had a hypothalamic hamartoma (HH), had surgery in the Barrow in Phoenix at age 12 and had huge challenges along his journey to success. David’s HH presented itself to us when he was 9 years old…

Read more

Meet Guilherme [Translation]

Meu nome é Renato e moro no Brasil com minha esposa e 2 filhos. Estou aqui para falar sobre meu filho mais velho, Guilherme. Nasceu em 2011. Junto com o HH, Guilherme também nasceu com polidactilia de ambas as mãos e de ambos os pés. Por muitas razões, digo que ele é realmente único. Levou…

Read more

Meet Guilherme

[see translation here] My name is Renato and I live in Brazil with my wife and 2 kids. I am here to tell you about my oldest son, Guilherme. He was born in 2011. Along with the hypothalamic hamartoma (HH), Guilherme also was born with polydactyly of both hands and both feet. For many reasons,…

Read more

Update on JoJo

We first introduced JoJo after his surgeries in 2011 when he was 19 months old.  He had a full removal of his large Type 4 Hypothalamic Hamartoma (HH) after two surgeries, a craniotomy to remove 90% of the HH and then endoscopic to remove the remaining 10%.  JoJo used to have 100 gelastic seizures a…

Read more

Meet Aiden

As soon as Aiden was born he started having what we called at that time “tiny panic attacks” where he would have a very rhythmic cry for a couple of seconds and then his eyes would roll upward and to the left for a second while his arms flew out to his sides. It would…

Read more

Meet Calebe [Translation]

Hola comunidad de HH, mi nombre es Calebe, tengo 9 años. Soy de João Pessoa, Paraíba, Brasil. Tengo un hamartoma hipotalámico extraño (HH). Me diagnosticaron hamartoma hipotalámico (HH) en 2018. Sin embargo, desde mis primeros años de vida sufrí los síntomas de esta enfermedad. Siempre he tenido convulsiones, pero me llevó tiempo determinar la causa de estas…

Read more

Meet Calebe

[see translation here] Hello HH community, my name is Calebe, I am 9 years old.  I’m from João Pessoa, Paraíba, Brazil. I have a weird hypothalamic hamartoma (HH). I was diagnosed with hypothalamic hamartoma (HH) in 2018. However, from my first years of life I suffered from the symptoms of this disease. I have always…

Read more

Meet Amanda

“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.” I was diagnosed 21 years ago with a brain tumor when I was just one year old. When I think about having my brain tumor, I can remember the various scenarios and feelings that I went through. Throughout my treatment I can…

Read more

Meet Sofia [Translation]

Olá, meu nome é Luis Paulo e eu sou o pai da pequena Sofia. Estou escrevendo este blog no Hope For HH e compartilho um pouco da história de HH da Sofia. Espero que isso ajude a divulgar informações sobre hamartomas hipotalâmicos e a organização e site Hope For HH. Sofia sofria de ataques de…

Read more

Meet Sofia

[see translation here] Hello, my name is Luis Paulo and I’m the father of the little Sofia. I’m writing this blog on Hope For HH share a little of Sofia’s HH story. I’m hoping this will help spread information about hypothalamic hamartomas and the Hope For HH organization and website. Sofia suffered from bouts of…

Read more

Meet Kate

When Kate was born in August of 2014, in Fargo, ND, the nurses immediately commented on how ‘vocal’ she was. We were a sleepless family, as she would always wake in the night, making her ‘crying noise.’ She often had episodes throughout the week, where it would last the entire night. I can recall her…

Read more

Meet Charlotte (Charli)

Echoing so many of your stories of HH (hypothalamic hamartoma) discovery, Charlotte was born on the 22nd July 2004 in Brisbane, Queensland, Australia. My pregnancy was not complicated, I did have gestational diabetes, but a mild form that was controlled by diet. Charlotte, or Charli to her family, did however show signs of an enlarged…

Read more

Meet Layla

Layla is our sweet Valentine baby, born February 14, 2014. She arrived 10 days past her due date in the biggest snow storm that year. We joke that she has been doing things her own way since before she was born. She is very spunky, strong willed and quite the negotiator. She is truly one…

Read more

Meet Anniston

Josh and I found out we were pregnant with Anniston on our one year engagement anniversary (about 2 months before we got married) – the pregnancy was unplanned but we were both excited and felt blessed to have been able to conceive so quickly. During my pregnancy I had a subchronic hemorrhage in the beginning…

Read more
Meet More Families

Our Programs

Hope for Hypothalamic Hamartomas offers helpful programs to help patients navigate through their journey from initial diagnosis to further treatment and more.

Patient Conferences

  • Providing HH patients and families to connect with one another face to face
  • Multi-day events providing information and education through guest speakers
  • Over the past 10 years Hope For HH has hosted 4 Patient Conferences with the next scheduled for October 2021.

Research Grants

  • Hope For HH continues to fund grants supporting researchers
  • Current grants include:
    • Genomic Profiling
  • Past grants include:
    • Resting state functional Magnetic Resonance Imaging (fMRI)
    • Generating a Novel Rat Model of HH

Patient Support

  • Provided 80 Patient Surgical Support since 2017.
  • Dedicated volunteers providing individual support to patients and families.
  • Downloadable education tools and resources for patients, caregivers and healthcare providers

Professional HH Symposiums

  • Over the past 10 years Hope For HH has funded 3 HH International symposiums with the next scheduled for 2022 in Calgary, Canada.
  • These events gather the foremost experts in hypothalamic hamartomas to increase understanding of HH, disseminate best practices and identify new research opportunities.
  • Hope For HH provides grants to young investigators to attend these events to foster those with pursuing a professional focus on HH
Donate Today to Fund These Programs

Dr. William D. Gaillard, Chairman, 4th International Symposium on Hypothalamic Hamartomas, shares a brief overview of the 2 day conference and new opportunities for collaboration and research.

Now Trending

Our Partners

STAY INFORMED.

Important Research and Foundation news straight to your inbox

To stay abreast of current HH news & information, simply click “Sign Up” and complete the information on the sign up form.

Click Here Sign Up