Did You Have HH Surgery 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.

They will be asking questions like those below via telephone: 
  • do you still have seizures
  • what medications are you taking? 
  • have you had other surgical procedures after the Melbourne operation
  • Plus information about your height, weight, education, employment, etc.
This 10 year outcome research is incredibly important. If you had HH surgery in Australia, please contact Dr. Freeman below.


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

Clinical Trial Begins for  Scalpel-Free Surgery to Treat Epilepsy/Hamartomas

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.

4 Years Seizure Free!

Congrats to Christopher and Jaden who are both 4 years seizure, medication and symptom free following their laser surgeries in 2012. 

And so glad for the very special friendship of these two boys and their families. Wishing you all continued health and blessings. 

Meet Jack!
And his family who share their journey from peculiar arched back and head tilting symptoms to an accurate diagnosis. Once again, Jack's parents reinforce the importance of listening to that little voice in your head and being your child's best advocate! Read more here. 
Any Correlation Between Lupron & Seizures?
Almost daily we observe new HH related questions on each of the HH Facebook pages. Most recently, whether anyone has noticed a correlation between treatment with Lupron for precocious puberty and an increase in 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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