Hope for Hypothalamic Hamartomas

Hope for HH seeks to provide information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and to promote research toward early detection, improved treatments, living with HH, and cure.

Hope for Hypothalamic Hamartomas (Hope for HH) is a 501c3 non-profit foundation that provides critical information, community support, and funds research grants for improved detection and treatment of hypothalamic hamartomas - a rare brain tumor and seizure disorder.

Hypothalamic hamartomas (HH) occur 1 in every 200,000 children and is present at birth. Most children and adults will experience uncontrollable laughter (gelastic seizures) as well as other more devastating and difficult to treat seizure types. They may also develop endocrine disturbances, exhibit rage behaviors, and experience cognitive decline as well.

HH lesions and gelastic seizures often go undetected on EEGs and are commonly missed on standard brain imaging. HH symptoms may be misdiagnosed as colic or a behavior disorder in the very young. Individuals often go years without a correct diagnosis and the result can be cognitive and behavioral deterioration, learning disabilities, memory deficits and job discrimination.

Hope for HH was started in 2009 by mothers with kids with HH. Our goal was to make a difference in the lives of families affected by HH. Our initial focus was to
identify the wide range of symptoms that were going unidentified, reduce the time it took to get a correct diagnosis, and advance the current treatments to improve outcomes. We also wanted to provide a community where families could share experiences and find a sense of belonging.

Over the years, our efforts have expanded and supported the development of new, less invasive surgical treatments for HH such as the MR-guided laser. Recently, Hope for HH has been able to invest in research to develop critical imaging that accurately pinpoints seizure location and the result is improved laser surgery outcomes. We have also worked hard to foster international efforts to understand the many complexities of this disorder and standardize treatments worldwide.

Your generous support during Arizona Gives Day helps Hope for HH continue this effort by helping:

" Maintain the Hope for HH Website with up-to-date medically accurate information
" Support Family Conferences where patients and their families can obtain the latest findings in HH treatment and research, as well as meet other HH families
" Deliver Surgery Care bags to patients and their caregivers while receiving treatment
" Fund research grants to improve care and one day find a cure