Hope For Hypothalamic Hamartomas - August 2023
Are you READY?
September is International Hypothalamic Hamartoma (HH) Awareness Month! We cannot stress how critical YOU are in our mission and the huge IMPACT your efforts have on improving the lives of those living daily with this rare syndrome.
 
We need our Hope for HH community to rally together and take action in raising awareness and donations. This is our opportunity to focus all our efforts in raising awareness throughout our individual families, communities and beyond as we continue our fight to improve the lives of those with HH Syndrome.
 
Here are some great ways you can participate:
Order your HOPE shirts today
We are so excited about the new designs in the Hope for HH Bonfire store. Shirts and sweatshirts available in adult and kid sizes. Make sure not to miss out on ordering your FIGHTING FOR RARE and RARE MAMA BEARS shirts!
Be ready for International HH Awareness Day (September 15th) by buying your Hope for HH shirt today.

Our goal is to sell over 100 shirts by the end of International HH Awareness Month raising funds to allow us to continue to serve the Hope for HH community through our support, information, and HH research initiatives.
Join Our Facebook Group
Join the Hope For HH Community Facebook private group and get the emotional support you need from others in similar circumstances, gain practical advice and insights on managing treatment or therapies for the various comorbidities (symptoms) associated with hypothalamic hamartomas.

Our group provides individuals and families to truly connect, make real friendships, and share daily ups and downs in a judgment-free place.
This group is intended for those impacted by HH including individuals with HH as well as HH caregivers. In order to provide a safe environment when you request to join, you will be required to answer questions about your connection to HH.

Steps to Join:

  1. Before you request to join the Hope For HH Community Facebook group, please make sure you've completed the Contact Registry here: https://www.hopeforhh.org/join-us/
  2. Please note your request to join may take 2-3 days to process as we approve each member to ensure this private community group is a safe and positive environment.
  3. Link to group: https://www.facebook.com/groups/hopeforhhcommunity
Hope Contact Registry
The Hope for Hypothalamic Hamartomas Contact Registry is used to inform individuals with HH and caregivers about:

  •    Opportunities to participate in research
  •    Opportunities to contribute data
  •    Discoveries that may impact care decisions
  •    Hope For HH funded research grants
  •    Hope For HH hosted patient and caregiver events
  •    Fundraising initiatives and opportunities

Registrants’ contact information will not be shared with anyone outside of the Hope For HH organization. Registrants will be provided with contact information about relevant research, survey efforts and fundraising. These initiatives will include our own internal projects, as well as the projects of outside researchers.

To join completed the form here.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org