Research Grant Awards

Hope for HH has awarded the following grants to support research and professional conferences to facilitate strategic discussions by HH and other researchers and clinicians.

To apply for a research grant, please send a Letter of Intent (LOI) to info@hopeforhh.org outlining the hypothesis and aims and include a description of how research will benefit HH patients in 2 pages maximum. Grant requests are considered throughout the year in collaboration with Hope for HH’s Medical Advisory Board. 

Target grant areas include causes of HH, therapies for HH, quality of life for individuals living with HH, epidemiology, and better data collection/management of individuals with HH. To support our research and other programs, please donate here.

2017

Dr. Varina BoerwinkleDr. Varina Boerwinkle

Resting state functional MRI (rs-fMRI) and hypothalamic hamartomas

Location: Baylor College of Medicine, Texas Childrens Hospital, Barrow Neurological Institute

Grant Description:

  • determine whether rs-fMRI reliably identifies the areas of the brain that are appropriate targets for laser ablation;
  • determine the correlation with the child's seizure frequency 6 to 12 months later;
  • understanding whole brain network relationships in HH patients.

Grant Funding:

This grant was generously funded in collaboration with The Allalouf Family and the Mo-o-ving Thru the Mud for Landon fundraiser. We are also grateful for the admin support of our Hope for HH UK Affiliate.

Dr. Karen Wilcox

Dr. Peter WestDr. Peter West

Generating a Novel Rat Model of HH

Location: University of Utah, Anticonvulsant Drug Development Program

Grant Description:

The search for new treatments for the seizures and cognitive deficits resulting from hypothalamic hamartomas has been hindered by a complete lack of animal models of this condition. The research proposed here hopes to facilitate therapy discovery by generating a new and innovative animal model of hypothalamic hamartoma.

Grant Funding: Hope for HH

 

 

 

 

2016

Research Grants 3rd International HH Symposium

3rd International Symposium on Hypothalamic Hamartomas

Location: London, UK

Grant Description:

On September 16, Hope for HH collaborated with Hope for HH UK and the University College of London (UCL) to bring together 60 + researchers from around the world to 

London, UK to set a strategic roadmap for HH. The meeting, titled the "3rd International Symposium on Hypothalamic Hamartomas," had an ambitious agenda covering key research topics in HH including:

  • developmental biology & genetics
  • epileptogenesis in HH
  • wider effects of HH Syndrome on the brain
  • surgical treatment of HH

HH and epilepsy thought leaders gathered from 9 countries including Australia, France, German, Italy, United Kingdom, USA, Japan, China, and Switzerland and represented multi-specialty areas including basic scientists, endocrinology, epidemiology, neuropsychiatry, neuropsychology, imaging, neurology, neurosurgery, genetics, and patient management and care. Two exciting outcomes emerged from the meeting:

  • plans to explore the development of a HH tissue consortium (biobank) - researchers need tissue from surgeries so they can understand how HH develops and how to best treat HH
  • an international study to better assess the pros and cons of each of the surgical interventions. 

For a video recap of the meeting by Chair Dr. Helen Cross, click here.

Grant Funding:

Acorda Therapeutics, American Epilepsy Society, Barrow Foundation UK, Barrow Neurological Institute/Dignity Health, Cure Epilepsy, Elekta, Epilepsy Foundation, Focused Ultrasound Foundation, Hope for HH, Hope for HH UK, Leksall Gammaknife Society, Medtronic, Ronson Foundation, UCB

Research Grants 3rd International HH Symposium

3rd International Workshop on Hypothalamic Hamartomas

Location: London, UK

Grant Description:

On September 17, nine HH experts presented to UK & European doctors and nurses (clinicians) on best practices in HH diagnosis, treatment, management and care.  

Each of the nine powerpoint presentations can be accessed on Hope for HH's YouTube Channel here. Each presentation is available in FULL (long versions) or you can watch a QUICK INTERVIEWS for the key points. 

This is the most up-to-date research on hot topics including laser ablation, imaging (FMRI) in diagnosing and targeting HH, behavioral and cognitive side effects of HH and more!

Grant Funding:

Acorda Therapeutics, American Epilepsy Society, Barrow Foundation UK, Barrow Neurological Institute/Dignity Health, Cure Epilepsy, Elekta, Epilepsy Foundation, Focused Ultrasound Foundation, Hope for HH, Hope for HH UK, Leksall Gammaknife Society, Medtronic, Ronson Foundation, UCB

 

Previous Years
  • 2013 - 2nd International Symposium on Hypothalamic Hamartomas, Marseille, France.
  • 2013 - BNI Project funded (Dr. Wu)