Earlier this year, Ilene Miller, Hope for HH President attended  the Epilepsy  Foundation's annual Pipeline Conference.   The 2 day Pipeline was followed by a Community Day. Highlights from the meeting included:
  • The future of epilepsy medicine will be orphan indications based on genetic, structural components of the epilepsy. This could be good news for HH - drug companies are looking for small diseases they can target based on the unique aspects of the condition.
  • Look out for more therapeutic devices like seizure alerts/predictors; diaries; etc
  • Companies are exploring new drug delivery methods - think inhalants; 
  • Developing minimally invasive surgery using focal energy like laser and ultrasound remains hot; 
  • Lots of discussion about the efficacy of cannaboidials.
You can see ALL of the videos from the two day pipeline conference  here . A few MUST SEE talks are listed below:
See Hope for HH President Ilene Miller in action: talk about the importance of collaborations and partnerships  here  and the difference parents can make  here

As always, the Hope for HH strives to keep our patients, caregivers and community up-to-date on all that is happening in the HH and the epilepsies.

Your Hope for HH Board

Best Meds for Anger Outbursts? Side Effects from Bazel?
The HH Survivors Facebook page continues to field many questions from families about things like the best meds for anger outbursts and any side effects families have observed on Bazel. Your individual replies and experiences are key toward informing other parents.  Capturing this same information in a registry like the Rare Epilepsy Network - will help researchers identify trends and patterns that might otherwise be missed!

PLEASE sign up for the REN TODAY Need help? We are standing by to help you - contact us here . Hope for HH was featured in the REN Newsletter. Check it out here
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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.