UNDERSTANDING HH IMPACT ON YOU!
How is HH impacting you? 
Are you experiencing symptoms and other health conditions? 

We want to hear from you! Take the HH Survey TODAY. Click here

Whether you have HH, care for someone with HH, or if your loved one with HH has passed away -  please help us identify all of the symptoms that may be related to the HH. Need more reasons why you should participate, read our blog here

Having technical difficulties with the survey or made an error on the Consent questions and got kicked out of the survey? H ave any questions on a specific category of questions? Send an email to Erica for assistance.


MEET TWO MORE SENSATIONAL PRESENTERS!

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


ANSWER THE CALL!

Phones are ringing this summer.
A group of HH parent volunteers are making phone calls to families
in our database to check in and say HELLO.
If you are not already in our database or we don't have your phone number,
now is also a great time to be added or update your contact information.
Simply complete the JOIN US form.

THANKS TO OUR AWESOME FUNDRAISERS
Got a birthday, anniversary or other special occasion to celebrate?   Join CJ and Ashley by doing it in honor of Hope for HH! 
 
These dollars are critical toward supporting Hope's  information, support and research. 
Launch your own fundraiser here




OTHER EVENTS & NEWS OF INTEREST...
OHIO SEVERE EPILEPSY SUMMER MEET UP
 EPILEPSY ADVOCATE MAG FEATURES HH DRS


Thanks to our good friends at the LGS Foundation. They are organizing an in person facilitated "meet up" for families living with LGS and other rare and severe epilepsies like HH. The gathering will be in Westerville, OH this summer. Live nearby? To RSVP or for more information, contact: Karen Groff or 614.581.2167. 
Super excited to share an article featuring the very exciting work of Drs. Berkovic and Heinzen. They have done critical genetic work in HH as well. We are excited to read about the advances being made to understand epilepsies broadly in the hopes it will impact our understanding of HH. Read the full article 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?