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Our other 3 fundraising teams! Help them meet their personal fundraising goals by making a donation here: givebutter.com/15yearsHHAware… #raredisease #braintumor #epilepsy #neurology #neurosurgery #endocrine #hypothalamichamartoma #neurotwitter

Dr Shirozu is the Head of the Functional Neurosurgery Department, Chief of the Hypothalamic Hamartoma (HH) Center, & Head of the Laboratory of Neurophysiology at NCNH (Japan). He has been a member of our MAB since 2017. Thankful for all his work on HH Syndrome! #neurotwitter

Sofia's story is a reminder of the struggles our families experience when trying to get diagnosed. The gelastic seizures are often dismissed as colic or just being difficult to sooth.  hopeforhh.org/meet-sofia2/ #braintumor #epilepsy #neurology #endocrine #hypothalamichamartoma

Outcomes from the 4th International HH Symposium were published in Neurology. Thank you to our MAB members and to Dr Nathan Cohen for their dedication to this critical publication. bit.ly/4ef1W1r #braintumor #neurology #neurosurgery #endocrine #hypothalamichamartoma

Dr Jie Wu, MD, PhD is a Professor & the Director of the Brain Function and Disease Lab at the Shantou University Medical College. Prior to this, he was the Director of Epilepsy Research &nthe Director of Neurophysiology Lab at the Barrow Neurological Institute. #neurotwitter

"Endless testing, traveling halfway across country for experts. Misdiagnosing seizures on “autistic behavior” or being colic. 2 brain biopsies, 18 sedated MRIs, 30+ blood draws, 2 spinal taps, 5 EEGs. 5 years later FINALLY getting surgery & hoping for seizure freedom." Michelle

We continue our 'What I Wish People Knew' initiative with Ruslan. Ruslan's mom shares with us the impact of living with HH Syndrome and his hopes for the future. #raredisease #braintumor #epilepsy #neurology #neurosurgery #endocrine #hypothalamichamartoma #neurotwitter

Dr. Kevin Yuen a Neuroendocrinologist at Barrow Neurological Institute. He serves as medical director of both the Barrow Pituitary Center and the Barrow Neuroendocrinology Clinic. He has been on our MAB since 2021. #braintumor #endocrine #hypothalamichamartoma #neurotwitter

Today we would like to introduce you to amazing Anniston. Thank you to her mom, Ashley, and the entire family for their continued support of Hope for HH. #raredisease #braintumor #epilepsy #neurology #neurosurgery #endocrine #hypothalamichamartoma #neurotwitter

Please help us welcome our newest Medical Advisory Board member, Dr Alexander Weil. Thank you, Dr Weil, for your work and advocacy on behalf of our #HopeforHH community. #braintumor #epilepsy #hypothalamichamartoma

National Epilepsy Awareness Month (#NEAM2024) is our opportunity to Educate, Advocate, and Get Involved in raising awareness of the rare #gelastic #seizures and other conditions associated with Hypothalamic Hamartoma Syndrome. #hypothalamichamartomas #braintumor #rareepilepsy

#NEAM2024 Individuals with Hypothalamic Hamartoma Syndrome experience drug-resistant gelastic (laughing) and/or dacrystic (crying) #seizures. Learn more about #gelastic epilepsy here: hopeforhh.org/what-is-hh/wha… #hypothalamichamartomas

#NEAM2024 is our opportunity to join with other rare #epilepsy advocates & raise awareness on behalf of the 65 million people worldwide who live with seizures many whom like our community deal with medication-resistant seizures. hopeforhh.org/what-is-hh/wha… #hypothalamichamartomas

#NEAM2024 'Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined.' Epilepsy Foundation of America

#1in26 Americans will develop epilepsy in their lifetime. #NEAM2024 Top causes include: ⚠️ Brain tumors ⚠️ TBI ⚠️ Congenital conditions ⚠️ Autoimmune epilepsy ⚠️ Genetic disorders ⚠️ Strokes ⚠️ Fevers or infections ⚠️ Low blood sugar levels ⚠️ Abnormal electrolyte levels

We are 1 in 3? #NEAM2024 For those with hypothalamic hamartomas and the associated medication-resistant #gelastic #seizures it is a daily struggle to find a combination of medications and surgical treatment to reduce seizure activity. #hypothalamichamartomas #braintumor

#NEAM2024 HH Syndrome is a complex ultra-rare brain tumor & epilepsy syndrome estimated to impact 1 out of 200,000 worldwide. HH is very much a spectrum disorder with symptoms varying from mild to life-threatening. hopeforhh.org/what-is-hh/und… #hypothalamichamartomas #braintumor

#NEAM2024 - Gelastic (laughing) seizures are the hallmark seizure of Hypothalamic Hamartoma Syndrome (HH). The majority of individuals with this rare brain lesion will experience #gelastic or #dacrystic (crying) seizures and progress to other types. hopeforhh.org/what-is-hh/wha…

#NEAM2024 - It is estimated less than 5% of individuals with HH Syndrome achieve seizure control with medication alone. For those with HH it is a daily struggle to find a combination of medications and surgical treatment to reduce seizure activity. hopeforhh.org/what-is-hh/tre…

Another common early seizure type associated with Hypothalamic Hamartoma Syndrome are dacrystic seizures. Dacrystic seizures are classified as focal emotional seizures (source: ILAE).