YOU SHARED, WE LISTENED!
Any of these comments sound familiar? 
Just a few of the comments we picked up through your  feedback.

Big thanks to the HH community for participating in the Comorbidity survey. More than 250 individuals form 20 different countries participated. Survey findings will be shared with the Hope for HH Medical Advisory Board as well as well as the 60+ international experts converging on Washington DC Sept. 12-14 for the 4th International HH Symposium to set a research roadmap for HH.

Thanks to our survey leaders - Erica Webster and Lisa Soeby - for their efforts in developing, disseminating, and analyzing the survey results.  And special thanks to Roza Wu for undertaking to translate the survey in Russian and extended outreach to patients throughout Eastern Europe and Northern Asia. Stay tuned for a summary we will share with our patients and families.

MEET MORE SYMPOSIUM SPEAKERS




The 
4th International Symposium on Hypothalamic Hamartomas for researchers and clinicians will take place this fall. Meet two more of the exceptional presenters who will help set a path forward for HH research. 
The Symposium is organized by Hope for HH every 3 years to create an opportunity to strategize new research and clinical opportunities.
  
Want to directly support new and innovative HH research? 
Please consider a donation or sponsorship to the Symposium. 
For more information,  contact Ilene. 


CRITICAL TOPICS ADDRESSED DURING LGS WEBINARS & EF FACEBOOK LIVES THIS FALL
Hope for HH is pleased to partner with other GREAT organizations to bring you timely information on critical topics. Check out 4 programs below we hope you will value. And be sure to tell our friends at LGS and EF that HH sent you on over. Note 14% of all HH patients also have LGS. Even for patients that may not have a specific LGS diagnosis - there are many similarities between our diseases and our concerns.  

9/3 @ 6 PM EST

 LGS Foundation presents a webinar titled " Effective IEP Advocacy Skills"  This session will introduce you to an overview of the skills needed to make you an effective advocate during the IEP process. Join special guest, Monika Jones, CEO of The Brain Recovery Project: Childhood Epilepsy Surgery Foundation , as we prepare for the new school year. Register here: https://meeting.zoho.com/meeting/register?sessionId=1020135853
9/5 @ 5 PM EST EF presents a Facebook Live titled "Who's on Your Team" Join Patty Osborne Shafer RN, MN, and Nathan Fountain MD  to find out who should be on your epilepsy team to ensure you are getting the best possible care. Bring your questions! More info here: https://www.facebook.com/events/661961394214343/
9/10 @ 6 PM EST LGS Foundation presents  a webinar titled "Seizure Alert Devices & Technology": A recommended follow-up to Dr. Jeff Buchhalter's recent webinar on SUDEP, Tom Stanton, Executive Director of The Danny Did Foundation, will share his knowledge of the most popular seizure detection devices on the market and how effective they may be. Register here: https://meeting.zoho.com/meeting/register?sessionId=1040106739
9/17 @ 6 PM EST LGS Foundation presents  a webinar titled "Rescue Meds"  When do you give them? What options are out there? Why should you have a Seizure Action Plan? What are the risks and/or benefits of using them? Please join Dr. Lawrence Hirsch, co-director of the Yale School of Medicine Epilepsy & Seizure Center, as he addresses these questions. Register here: https://meeting.zoho.com/meeting/register?sessionId=1092968317



3 HH HEROES & THEIR JOURNEYS!



Follow David's story as he joins the Northern Ireland Opera this fall.  Meet Max and his story of diagnosis and discovery.  Read about Francesco and his brave treatment journey here. 

METRO DC - GRAB YOUR SNEAKERS...

 Great Strides 5K
 
to benefit the 

Hope for Hypothalamic Hamartomas 

Date:
 Sunday, September 15th @  8AM EST

Location:
The Camalier Building
10215 Fernwood Rd. 
Bethesda, MD 20817
Free parking.    

Register  here!

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.

DO YOU GET IT ALL?