Newly Diagnosed Because many symptoms and comorbidities of hypothalamic hamartoma can lead to complications and evolve over an individual’s lifetime, the expertise of a multidisciplinary team is needed to effectively manage patients with hypothalamic hamartoma. That team should recommend a care plan for you or your loved one with hypothalamic hamartoma, based on your individual…
Could it be HH? Getting a correct diagnosis, in a timely manner, can be challenging for individuals with a hypothalamic hamartoma (HH). Understanding the common symptoms and how HH can manifest differently among individuals, will be helpful when talking to your medical provider. Once an accurate diagnosis is achieved, the important discussions about a treatment…
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…
Hope for Hypothalamic Hamartomas is a volunteer run nonprofit organization. We rely on the generosity of our donors to provide individuals with HH and their families with the following: 1:1 patient and caregiver support through phone and email Patient and family support and education events Surgical support bags provided to those undergoing surgical treatment Virtual…
The Hope for Hypothalamic Hamartomas Contact Registry is used to inform individuals with HH and caregivers about: Opportunities to participate in research Opportunities to contribute data Discoveries about hypothalamic hamartomas that may impact care decisions Hope For HH funded research grants Hope For HH hosted patient and caregiver events Fundraising initiatives and opportunities Registrants’ contact…
Volunteer Volunteering your time allows Hope for Hypothalamic Hamartomas to expand its mission to help those individuals with HH, provide support to HH caregivers and increase awareness of this rare brain tumor and epilepsy disorder. Are you inspired to help those living with HH? To get the process started in becoming a Hope for HH…
Newsletter The Hope For Hypothalamic Hamartomas newsletter is our way of sharing information about innovations in treatment and research, support programs and events as well as current educational and awareness initiatives. Don’t miss out on critical information regarding hypothalamic hamartoma and sign up today. Sign Up for Our Newsletter Newsletter Signup Close Research Hope for…
Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking…
Understanding HH Overview Incidence and Prevalence Etiology HH Lesion Types Diagnosis of HH Age of Seizure Onset Presentation of Seizure Types How Seizures Change Over Time Treatment Comorbidities Overview Hypothalamic hamartomas (HH) are lesions that arise in the ventral hypothalamic region while the brain is forming in utero. The syndrome is commonly associated with a…
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 husband and I…