Hope For Hypothalamic Hamartomas - September 2020
September is International HH Awareness Month
Hope For Hypothalamic Hamartomas is proud to announce this September as the inaugural International Hypothalamic Hamartoma (HH) Awareness Month with September 15th being recognized internationally as HH Awareness Day.

Throughout the month of September our goal is to raise awareness about HH as a complex syndrome impacting children and adults. By helping us raise awareness of HH you are increasing the knowledge with your family, friends and community as well as medical professionals who may not have experience with HH patients.

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!
Critical Time For Small Nonprofits Like Ours!
Current challenges associated with the COVID-19 crisis could result in a closing of 3/4 of nonprofits in existence prior to the pandemic. For most organizations there has been a decrease in funding, loss of volunteer support, and a reduction in funding for research not related to COVID-19.
So why support Hope for HH? We are the ONLY nonprofit in the world dedicated to finding answers and supporting YOU – the patients and families affected by HH. Without this organization, there would no longer be advocates dedicated to pushing professionals to not let HH be one of the many topics that will be put aside for the next year!

The good news is we are an all volunteer organization that operates virtually. However, we still have operating expenses that have to be paid. We also desperately want to continue our efforts to provide up-to-date resources and fund cutting edge research whenever possible. We cannot do this alone! We need your help to continue the fight on behalf of this community!
Hope for HH was founded in 2009 by 5 mothers of kids with HH. Over the last 10 years, we have driven change in how HH is diagnosed and treated, defined HH as a complex syndrome, and supported critical research in HH imaging and genetic causes of HH. There is still so much left to do! Here are some things you can do to help us make a difference and keep the science focused on an appropriate treatment for everyone and perhaps one day, a cure for all.
Support Hope For HH NOW
Support Hope for HH now – make a one time or monthly donation, host a Facebook campaign, create your own virtual fundraiser, or be creative and let us know what you have come up with!!
Fundraise for a Cause – some of the projects that we are working on and would love to continue:
  • Virtual Family Forum in 2021
  • Future Website Upgrade
  • Continue funding research into genetic cause of HH
  • 5th International Professional Symposium in 2022
$10K For CHANGE!
The month of September is HH Awareness Month and are asking for your help to raise $10K to continue to support patients and families and drive the science to improve treatment outcomes! No amount is too small…your change for CHANGE!
In fact, that could be:
  •  $10, the price of a couple lattes that you are not buying on your way to work.
  •  $100, the cost of a couple dinners and a movie that you are not sharing this month.
  • $1000, the weekend trip to the beach you couldn’t make due to COVID-19.
While these seem like minor splurges we may have given up during this pandemic, HH patients and families give up so much more every day. Lives are shattered, families pushed to their limits. What a great time to donate and help us continue to advocate and create change!
Give us your change so we can make change!!

Donate through our website here
Donate through our Facebook Fundraiser here
International HH Awareness Day
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