You know it's summer when the muddy pics start showing up on Hope for HH facebook page. Congrats to our loyal friends in TX for another successful Moovin' Thru the Mud with Landon to benefit Hope for HH. Photos below. 
Plus a few other shout outs :


Congrats to MAB Chair Helen Cross for winning the prestigious Sidney Carter Award in Child neurology by the American Academy of Neurology. AAN is the world's largest association of neurologists and neuroscientists and Dr. Cross was recognized for outstanding achievements, one among them is as the extraordinary chair of the Hope for HH MAB 

 

 

And just in case you missed the cutest photo. Check out HH patient Colby in the Bat mobile. What a special treat for a special boy and family. 

 

 

 

Kudos to Lisa Soeby who presented remarks recently at EF Arizona. Lisa is HH's best advocate - going above and beyond to raise awareness for all HH families. 

 

Breaking news - the first Focused Ultrasound case has been completed for HH. You can read about it here. 


 

And a webinar is in the works with our friends at Epilepsy Foundation for the summer. Stay tuned for more information. 


 

Have you registered for the DC Family Forum this December? You are NOT going to want to miss this event. More info below. 


Hope you are enjoying summer, 
Hope for HH Board of Directors

Special Research Issue on HH  
Kudos to HH Medical Advisory Board members Drs. Jean Regis and John
(Jack) Kerrigan who served as guest editors for a special supplement to Epilepsia titled "Hypothalamic Hamartomas and Epilepsy." These articles were just one of the outcomes from the 2nd International Hypothalamic Hamartomas Symposium in Marseille (9/2013). In 2016, a 3rd International Symposium was organized and we hope a supplement will follow that as well. Although the Marseille Symposium was in 2013, the articles are up-to-date as of publication and feature many thought leaders in HH. The supplement - which is targeted toward medical professionals and researchers - is available for purchase here. Hope for HH will blog "lay" summaries of each article in the coming months for our patients and caregivers.

Topics include:

  • Achieving a cure for Hypothalamic Hamartomas
  • Clinical features & evolution of the gelastic seizures-hypothalamic hamartoma syndrome
  • Medical Management and anti epileptic drugs in hypothalamic hamartoma
  • Hypothalamic Hamartoma: Neuropathology and epileptogensis
  • Hypothalamic Hamartoma: Epileptogenesis beyond the Lesion?
  • Reduced glucose metabolism in neocortical network nodes remote from hypothalamic hamartaoms reflects cognitive impairment
  • Hypothalamic Hamartoma with epilepsy: Review of endocrine Comorbidity
  • Safety and efficacy of Gamma Knife radio surgery in Hypothalamic Hamartomas with sever epilepsies
  • Gamma Knife radio surgery for hypothalamic hamartoma preserves endocrine functions
  • Laser interstitial thermal therapy: a First line treatment for seizures due to hypothalamic hamartoma? 
  • Cognition in epilepsy patients with hypothalamic hamartomas
Register TODAY for the DC Family Forum
Our speaker line up is superb for the 2017 Family Forum in Washington, DC December 2-3. We will be doing a deep dive on HH and cognition, behavior, memory, transitions, endocrine, family dynamics, and alternative therapies.
Hotels fill up fast in December in DC. We urge you complete your forum registration and book your rooms NOW. Click below! 


mooving thru' the mud with Landon


It was a mud fest once again on June 3, 2017 in Gainesville Texas at the awesome Circle N Dairy. Huge thanks to Wendi and the Tipps extended family and friends. The entire Gainesville community supports this event. Special thanks to Landon's Loves Kathi Husereau, Michelle Neu, Kim Wiese, Cheryl Gomez, Lacy West, Marjan Schram, and Angie Smith.

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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