It's a new year and we at Hope are looking ahead to many opportunities to increase awareness of HH, support families, and fund research. February and March are filled with events to raise public awareness about HH, epilepsy and rare diseases. 

Post a photo, share a video story, spread information about seizure first aid, or put on your sneakers & take a "shoefie." There are unlimited ways you can get involved. What will you do? 
~~ Hope for HH Board of Directors

get involved


  International Epilepsy Day is February 13. Help get #EpilepsyDay trending around the world. 

HH patients live in every country around the world. 

Put your city, state/province & country on the HH map! 
Take a selfie and show it on social media with the hashtag: #EpilepsyDay; #HopeforHH.  

Together we will ensure faster diagnosis and more support in communities. 

Rare Disease Day  is held annually on the last day in February to raise awareness of rare and orphan diseases. 

HH impacts just 1/200,000 people. There are believed to be 30,000 people living with HH and seizures today. 

To mark Rare Disease day, upload a photo or video with your personal HH journey to Hope's Facebook page and your own.  By sharing your story, we will educate others about this rare diagnosis.

There is a Purple Day walk on March 18th at the Mall of America in Minneapolis, MN.  In conjunction with the walk, they will also hold a seizure first aid training session where they will try to set the Guinness World Records title for the largest epilepsy training session. 

Do you know what to do in the event of a seizure? Have you shared that information with your local school, church, community? 

Post seizure first aid to your social media channels and to make sure friends and family recognize and can quickly respond to a seizure. 

11th Annual National Walk For Epilepsy is in on March 25 in Washington, DC. Join the Hope for HH Team here 
If you can't walk in DC, organize your own local walk at home. Gather friends, family, neighbors, classmates, and colleagues; put on an HH t-shirt; and walk! Snap a picture and send it to Hope. 

In 2016, HH families organized walks from London to Arizona. How many walks can our community organize this year? And  New  2017 T-shirts will be available for sale  in soon! Stay tuned.  No time to walk - at least post a "Shoefie"!

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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