Introducing the HH Caregiver Trifold
 
Did summer fly by fast for you too? Hard to believe the new school year is upon us! To  ease your way into Back 2 School, Hope for HH has created a Caregiver Trifold to encourage one-o n-one conversations about HH with teachers, coaches, daycare providers, specialists, and caregivers. This compact trifold will give caregivers critical background on HH, seizure first aid tips, and a place for key emergency information. It's also great resource for adult HH patients to sha re with employers as needed. 


Download your copy of the HH Caregiver Trifold here

Were YOU Treated in Australia?
Dr. Jeremy Freeman, Neurologist, The Royal Children's Hospital Melbourne, has asked Hope for HH for help in identifying patients that had HH surgery in Australia 10 years ago for a follow up study they are doing on how those patients are doing now. They seek to present their findings at the 3rd Annual Hypothalamic Hamartoma Symposium this fall. It's just a quick phone call but the info collected is SUPER important.   


If you or a loved one had HH surgery in Australia, contact Dr. Freeman here

HH London Symposium Countdown!
Hop e for HH is super excited to be cohosting two critical research meetings this fall for professionalsl. On Sept. 15-16, 60 HH experts and epilepsy researchers and thought leaders from around the world are gath ering in London to exchange information on HH treatment and research and seed collaborations and set a roadmap for the next 3-5 years. Following, on Sept. 17 top HH experts will present an update to clinicians and other professionals throughout the UK and EU. Audio/Video from this conference will be available after the meeting. Stay tuned for links!

Adult HH Patients - Learn More about FUS
The University of Virginia Comprehensive Epilepsy Program is conducting a research study on the use of focused ultrasound to treat deep lesions in the brain causing intractable epilepsy in adults 18-80 years old (IRB 18914). The purpose of this study is to evaluate the effectiveness and safety of an investigational device that uses ultrasound waves from outside the head to treat seizures that are not well controlled by medication and are due to a small growth of abnormal cells in the middle of the brain, most commonly hypothalamic hamartomas. For questions, please contact the study coordinator, Stacy Thompson, RN or the principle investigator, Dr. Nathan Fountain. Details can be found at ClinicalTrials.gov. 

 Look for a comprehensive article on FUS coming soon!

Meet Sierra
Sierra is 20 and lives in Dublin, CA. She had brain surgery at 8 years old at Barrow Neurological Institute in Phoenix, AZ. Read more about her story  here.
Are HH Kids Lazy?
Another discussion thread on Facebook is are HH kids lazy or is it a symptom of the condition, medication, or seizures?  

It is precisely these types of questions we want answers to! Please join the Rare Epilepsy Network - a database where all patients and caregivers can share their personal experience with HH. Then doctors and researchers can access the information to identify patterns. We are standing by to help you - contact us here
Shop Amazon & Reward Hope for HH
Are you a regular on Amazon? Register on amazon smile, select Hope for HH and we will receive .5% of the price of all eligible purchases. It all adds up to more money for Hope!

Hope for Hypothalamic Hamartomas 

Provides information and support to HH patients, caregivers, and healthcare providers and  promotes research toward early detection, improved treatments, living with HH, and cure.

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