Hope For Hypothalamic Hamartomas - July 2021
Virtual Patient Conference
Save the Date - October 1st & 2nd

Hope For Hypothalamic Hamartomas is excited to host the 2021 Virtual Patient Conference. The focus of the event will include providing education, outreach, and resources to our adult and pediatric community as well as discussing the challenges facing caregivers.

Dates: October 1st and October 2nd

Registration opens on September 1st.
The live presentations at this year’s event will include:

  • Current State of Focused Ultrasound with a Contrast to Laser Ablation
  • Mental Health and Hypothalamic Hamartoma: A Life-Span Approach
  • Hormonal Changes of Hypothalamic Hamartoma: The Role of an Endocrinologist
  • Genetic Basis of HH: Ending the Diagnostic Journey
  • Practical Strategies to Support Memory and Executive Functions
  • Beyond the Seizures: Family Impacts of HH

We will also have small breakout sessions so our community can interact and ask questions of experts.

Breakout sessions to include:

  • Sleep, stress and mental health concerns for the adults with HH
  • Sleep, stress and mental health concerns in kids with HH
  • Siblings and family dynamics
  • Living with chronic stress
  • Transition from pediatrics to adult care
  • Alternative options for schooling.

Registration opens on September 1st.

Questions regarding the event? Contact Kathy Jensen (kjensen@hopeforhh.org)
Order your Choose Hope shirts today
Choose HOPE and get your Hope For Hypothalamic Hamartomas gear! This fundraiser is a fantastic way to support a great cause while making sure you're ready for Hypothalamic Hamartoma Awareness month (September) and the 2021 Virtual Patient Conference (October).

Our goal is to sell over 100 shirts and raise donations to fund our current programs for providing support, information, and driving 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.
Join the 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.

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 For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org