Hope For Hypothalamic Hamartomas - September 2022
International HH Awareness Month
Today we kickoff the 3rd annual International Hypothalamic Hamartoma (HH) Awareness Month! This is an opportunity for our HH community around the world to come together and make a difference in the future of HH diagnosis, treatment and living long-term with this rare and complex syndrome.

Help us spread awareness and educate the world about HH! Our goal is to improve the quality of life of people living with hypothalamic hamartomas (HH). Although generally characterized by rare gelastic (laughing) seizures, those living with HH understand it is more than an epilepsy syndrome. The comorbidities associated with HH include endocrine dysfunction, psychiatric conditions, cognitive impairment, and sleep disturbances. Working together with the HH community we can positively impact those living with this complex and rare syndrome by raising awareness, educating our communities, and pushing for more research.

We ask that you, our HH community, embrace this international awareness initiative throughout the month of September. Working together we'll ensure those with HH continue to have a voice!
Ways you can GET INVOLVED
We are often asked 'How can I help?' or 'How can I make a difference?' Below are a few easy ways you can participate during International HH Awareness Month. Do just one or do them all, its all up to you!
  1. SHARE and LIKE our Facebook and Instagram posts throughout the month.
  2. Send a photo and a short quote about living with HH. You can highlight your biggest concerns/issues, your biggest accomplishments, what you wish others understood about HH or even your biggest hopes in regards to living with this ultra-rare syndrome. We'll be sharing these photos on our social media accounts throughout the month. Email photo and quote to ewebster@hopeforhh.org
  3. Put on your Hope for HH gear, snap a photo, post to social media, tag Hope for HH and include #HHAwareness #HopeforHH
  4. Donate to the Hope for HH Facebook fundraiser here: https://www.facebook.com/donate/1713891092336903/ and share with your family and friends
  5. Create your personal Facebook fundraiser for Hope for HH here: https://www.facebook.com/HopeForHH/fundraisers
  6. Learn about the many ways (direct, company match, stocks, etc) you can donate to Hope for HH here: https://www.hopeforhh.org/donate/"
MAKING A DIFFERENCE with each dollar donated
Making a difference through the generous donations of our Hope for HH community, friends and families!!

Help us hit our ambitious $15,000 goal by the end of September!!! 

Share this International HH Awareness Month fundraiser (click here) with your circle of friends and family. Make sure to let people know Hope For HH is the only nonprofit organization focused on helping those with this rare disease through direct patient support, education, awareness, and research. As a 100% volunteer-run organization all donations directly towards initiatives (HH research) and programs (Patient Conferences) aligned with our mission to help all individuals living with HH.

Donate through our Facebook Fundraiser here
Want to Give Back to the HH Community?
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interests.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org